When we all united for PH Day UK
Family matters
How cover star siblings
Neer and Kinari are navigating pulmonary hypertension together
“You can’t makealways people understand you, and that’s ok”
Claire’s learnings from life with chronic illness
The first ever self-help programme specifically for people with PH and depression Also inside
“It’s
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Welcome to the final issue of 2024. What a year it’s been!
I'm writing this following another fantastic PH Day UK; our annual awareness initiative bringing the PH community together to raise the profile of the disease on 1st November.
There was a huge show of support in many different ways and I’m particularly grateful to those who told their stories so candidly, with some allowing us to film in their homes and share their words with local media. You can hear from these people on page 53
There are lots of other voices in this magazine too, and I’d like to take this opportunity to sincerely thank everyone who gets involved with Emphasis. It’s a publication that makes a difference to a lot of people, and we couldn’t provide it without your contributions and support.
Next year is a special one for our charity, as we mark 25 years since the inception of the PHA UK. It’s a meaningful anniversary, and as we look back on everything that’s happened since 2000, as a community we should all be proud of how we’ve supported each other. We’ll be celebrating, reflecting, and looking forward too, as 2025 begins. Finally, with dark nights and colder temperatures, please look after yourselves this winter. Ask for help if you need it and offer it to others where you can.
I wish you all the best for the festive season and the new year ahead. See you in 2025!
ASK
FOR HELP IF YOU NEED IT AND OFFER IT TO OTHERS WHERE YOU CAN
Iain Armstrong Chair of the PHA UK media@phauk.org
Neer Mehta on supporting his sister on her PH journey
United for Quinn
Friends and family have come together in support of 11-year-old Quinn Cattermole to raise thousands for our
53 “I do feel like one of the lucky ones”
PH affects different people in different ways, and some, like Derek Coles, are able to live near-normal lives with the disease.
54 “Every single day is a gift”
A year on from her heart and double lung transplant, Rebecca Brockbank is celebrating life and helping to raise awareness of both PH and organ donation.
56 “You can’t always make people understand you, and that’s ok”
Being diagnosed with PH has given Claire Lorenzilli a new perspective on life.
58 “Despite everything, Archie just gets on with things”
Archie O’Brian was diagnosed with PH at the age of five, and four years on, he still inspires his mum Sarah every day.
60 “Self-care is really important when you have PH”
Cherise Brand was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) just a month after qualifying as a mental health nurse.
62 “I’m concentrating on having as much fun as possible these days”
Nicki Ross is determined to make as many memories as possible.
PHA UK member Gareth Davies got in touch to tell us how he’s able to still enjoy football without playing – and by sharing his experiences, he hopes to inspire others. Gareth’s PH means he can no longer take part on the pitch, but he keeps his hand in the game by helping out at his local club, Ton Pentre AFC in South Wales.
Volunteering duties include setting up the kit for match days, attracting sponsorship, arranging friendlies, and managing social media.
Volunteering is a real family affair for Gareth, who said it ‘helps him so much’. He is often joined by his young daughter Hallie (pictured) and his father also helps at the club, manning the gate on match days and carrying out maintenance around the ground.
At the end of August, the club kindly dedicated a match to the PHA UK, raising much-appreciated money and awareness.
Overcoming anxiety with PH: An update on our self-help programme
Our four-week self-help programme to support people who live with anxiety or worry alongside pulmonary hypertension has now been requested by over 220 people in less than two years.
This would represent 2-3% of the total population in the UK with PH – so if you need help too, you’re definitely not on your own.
The programme, based on cognitive behavioural therapy (CBT), was developed with psychologists and consists
of four workbooks that can be completed in your own time at home. It’s the world’s first self-help programme specifically for people with PH and anxiety.
Before its launch in 2022 it was tested with people with PH as part of a controlled study, and 100% of those who took part said it helped them.
We worked with the psychologists behind the programme to conduct a further study earlier this year to seek feedback from those who have completed the programme, and details have been published in a prestigious research journal from the European Respiratory Society.
Turn to page 40 to find out more and order the programme for free.
PHA UK member Lauren John celebrated her summer marriage by giving all guests a PHA UK pin badge as part of the wedding favours. It was a pleasure to provide these little wooden badges for such a special occasion and we’re grateful to the couple for choosing to spread awareness in this way. If you’re getting married and would like to do the same, please email hello@phauk.org and we’ll be happy to help.
Fancy a badge for yourself?
You can buy one for £3 or five for £10 (with free P&P) at phauk.org/merchandise
"My PH team don’t encourage me to ignore my limits - because I do have them - but I’ve found they foster an encouraging environment for me to continue to (responsibly) push myself forward."
Read Emilia Ferraro's story on page 19
What you said about the last issue of Emphasis
Rachael “Thank you for the recent Emphasis magazine, so full of interest, information and uplifting articles.”
Maggie “Just received the magazine. Thanks for all positive stories. Helpful in every way."
Clare “I love receiving this magazine. It’s so inspirational, encouraging, and full of information about pulmonary hypertension.”
Email media@phauk.org or write to PHA UK (Emphasis), Unit 1, Newton Business Centre, Newton Chambers Road, Thorncliffe Park, Sheffield S35 2PH
I had to send a message regarding Dr Iain Armstrong's article 'Why compassion matters' in the last copy of Emphasis. I thought it was a perfectly written example of what a nurse does best, showing compassion. Through my journey with PH I've had the pleasure of meeting so many wonderful nurses who've not only showed me respect but also a massive amount of genuine compassion which helped get my head around my diagnosis.
Simon Dean
I wanted to tell you about my experiences of having a right heart catheter test.
After visiting a consultant at the Royal Brompton Hospital I was told I needed the test and that it could be organised in around 6 weeks.
I was very anxious about the procedure, but the doctor said it was routine… and he was right. The procedure was just wonderful, no pain, I could not feel a thing, and it was all very professional. I had just time when I got out
Are you missing out on Attendance Allowance?
to order lunch, as I was starving. Overall, the NHS has my full praise for my experiences.
I have been started on Sildenafil and although I have yet to see the full impact of my new treatment, I am hoping that reading through Emphasis will help me.
Mick Henry
If you're over 66 and need help with daily living due to your PH (or any other illness or disability), you could be due up to £5,644 a year.
Attendance Allowance is one of the most under-claimed benefits, and it's not based on income - so even if you can't claim anything else, it's worth looking into this. Find out more at bit.ly/Attendance_Allowance
I wanted to send you my own personal story for the magazine.
Around eight years ago, when I was out walking, I started to notice on any uphill incline that I was breathing heavier than usual. Being a male and dismissing any medical issue, I allowed this to continue, thinking it was my age and not being particularly fit.
Two people made me sit up and take notice of what was happening. The first was my lovely sister walking alongside me up a reasonable incline noticing I was struggling to maintain the conversation we were having by the top of the hill. “Get that checked” were her words to me on that day in 2016.
The second and more forced notice was when I was at work and my boss called me into the office looking rather serious. He asked how I was doing, and I stated all was good. He then said something to me that stopped me in my tracks. He stated that my work colleagues had noticed I was struggling with my breathing when at the top of the first flight of stairs and that I should contact my surgery right now and make an appointment. That forced me to do something, and soon.
An appointment was made to see my GP. At first, I was wrongly diagnosed with either a bad chest infection or chronic obstructive pulmonary disease (COPD) and was monitored. Nothing improved and I was referred to the chest clinic at my local hospital in Exeter, Devon. I had various tests at many appointments including cardiac and breathing checks.
The final hospital appointment, before a diagnosis was confirmed, involved an echocardiogram which made the cardiologist look at me rather concerned and he told me I was having a pulmonary embolism. This was a shock, and this had taken until the early part of 2017 to reach.
I was referred for further tests at Royal Papworth Hospital. Eventually I was asked to attend a meeting with a specialist nurse. The nurse explained that my current condition would only provide another couple of years of my life at best.
She explained that I had the very rare condition chronic thromboembolic pulmonary hypertension (CTEPH) and that there was a pioneering new surgery performed at this hospital that had a 50/50 chance of survival. We left the hospital and contemplated my options and jointly decided that I would go for this life-saving operation.
I was placed on a high priority waiting list that resulted in a surgery date of the 27th December 2017. My surgeon would be consultant Dr David Jenkins. The surgery thanks to David was a success and when I saw a photo of the clots they had removed, I was shocked and wondered how I could breathe at all.
The surgery day was far harder for my partner Emma than it was for me. She had to wait at the hospital for 10 hours before she knew I was out of surgery and doing fine. My full recovery would take the first six months of 2018 and now I am happy to report I am fit and well.
Emma and I both enjoy flying and before the operation on the 23rd September 2017, I flew in a two-seat Spitfire from Biggin Hill. I did this just in case I did not come through the surgery. Since then, we have flown with the Blades Aerobatic Team and other warbirds. Life is good.
Chris Wiseman
Our pulmonary hypertension community united on 1st November for another amazing PH Day UK. Thank you to everyone who got involved!
Lots of you put our photo cards to good use! Here are just a few of your faces (and a furry friend too)…
Packs to raise the profile of PH
A record number of people requested awareness packs or GP information packs to help spread the word amongst family, friends, workplaces, surgeries, and more. Thank you to everyone who displayed posters and information sheets – you really helped to put PH under the spotlight.
Column inches across the UK PHA UK members from each of the nations told their stories to their local media, and shared their experiences with us. A huge amount of awareness was raised in this way, and you can hear from everyone involved on page 53.
100 promises for PH People across the PH community and beyond made a public commitment to raise awareness, or support those living with invisible illnesses. See them all on our online pledge wall at phauk.org/promises
Scan above to watch our special short video, launched on PH Day UK. Thanks to everyone who played a part!
1. Adam completed a 4km sponsored run in memory of his granny, cheered on by his little sister.
2. The PH team from Royal Papworth Hospital held a big display and sold cakes.
3. Finlay and Anya made and sold loom bands and biscuits in support of their auntie Claire.
4. Laura Hughes and her toddlers walked every day of October and added a final stroll on PH Day UK in support of Laura’s baby niece Florence.
5. Clare Adams held a coffee and cake morning with family and friends, raising over £400.
6. Little PHighter Abbie dressed up in purple and took on a wheeling and walking challenge with her family.
Psychotherapist Sophie Papageorgis lives with PH and has heard her fair share of ignorant comments and questions. This issue, she explains how you can protect your mental health if you come across them too.
I was inspired to create this list with a few friends who have PH or heart conditions, or who have been in my life for a long time – and therefore witnessed some of these comments. Often this will be after yet another incident where I am challenged for using a disabled parking bay - despite having a blue badge up.
The bit that really grinds my gears is the assumption and rudeness with which people seem to feel it is acceptable to approach with, and it does make me wonder what happened to a bit of kindness in the world.
Anyway, opposite is a list of nuggets which my friends and I pulled together. I wonder if there are others that PHighters have experienced?
At the end of the list, you can read my tips for reducing the upset these types of comments can cause. After all, we may not be able to control what people say and do, but we can control how we react...
“You look well”
“You look dreadful”
“You’re blue, are you cold?”
“Where did you get your lipstick?”
(I like this one)
“This is a DISABLED bay for DISABLED people”
“Is it safe to climax?”
“Why don’t you have children?”
“You don’t need the lift, you can use the stairs”
“Are you allowed to do that?”
“Do you think you’ll live long enough?”
“Is it fair to have kids when you are unwell?”
“Can’t you just take medicine for that?”
“You’re too young to be this tired”
“Wait until you're my age, then you'll know what tiredness is”
“Is it catching?”
“You’re out of shape”
“Do some more exercise”
“Don’t be lazy”
“There's nothing very typical about you, is there?”
“You sound like a train puffing away”
“It’s psychological”
“It's stress-related”
“If you just get out more, you'll feel better”
“Stop making a fuss, you look alright”
“Just take a walk”
“Don't think about it”
“You’re so lucky you have a disabled badge”
“I wish I could get a free carer ticket like you do”
“When I was your age I was doing way more than you”
Don’t get me wrong, I am all for a bit of positive mental attitude. And sometimes people say things from a good place, or a curious place, or an ignorant place. But personally, I find it really difficult not to take comments like these offensively. It can lead to us feeling judged, misunderstood, and more alone. It can take its toll on our mental health. So what can we do about it?
Firstly, we can’t control other people, or make them want to change. The only thing we can control is how we react. It can be very difficult to stay calm if you feel angry or hurt by what others have said or how they have acted. Trying to keep the urge to fight back or withdraw under control can be tricky. We can
spend a lot of energy feeling hurt and resentful, often justifiably, but when energy is already on the low side, is this the best use of it? Putting it into healing and self-care is much more useful. Learning about ourselves, and why comments like this can be so triggering and upsetting, is a strong first step towards understanding and letting it go. It makes sense why it would hurt us, and by recognising and naming it, we can put our emotional energy into compassion towards ourselves, rather than getting grumpy about pointless passing comments from people who don’t have a clue what it’s like. And being the bigger person is always so much more satisfying!.
What’s the worst (or funniest) thing you’ve heard with PH? Let us know by emailing media@phauk.org and we’ll share another list in the next issue of this magazine.
Visit phauk.org/SophiesJourney to read more about Sophie’s experiences of PH
When it comes to caring for someone with PH, you've got to keep
It’s been ten years since Neer Mehta’s sister was diagnosed with pulmonary arterial hypertension, and the whole family have been on the journey together. In this special feature, Neer reflects on his role in supporting Kinari – and what he’s learned along the way.
It’s been a bit of a journey in terms of making sure my sister gets the right level of care, but at the same time ensuring she can live her best life as much as possible. Kinari is her own person; it’s not about keeping her in bubble wrap. She admits herself that she sometimes pushes on a lot because she knows how limited time is.
My piece in all of this is to try and provide some sense of normality of that brother-sister relationship, which is important so that she doesn’t feel everything is about the health condition.
A lot of what we do together as siblings is low intensity, but valuable. We go shopping together, which is a good way of encouraging Kinari out of the house to clear her head and be around people.
Walking around a shopping mall is a controlled environment, as it’s relatively safe given there are so many places to sit. We’ve got mutual friends, so we will sometimes all meet up at the pub. Meeting in a group is deliberate because it allows Kinari the space to breathe and grow, whilst we also spend time together
Travel is also something we love to do together, and it’s been a big part of our journey since Kinari’s diagnosis.
We travelled to Thailand and Cambodia before she went onto the IV medication. We went along with a couple of friends, and it was a nice balance as they could help lift her spirits when I couldn’t, and it was good to have another female around for her.
During our travels since, she always wants to explore the world further. Some challenges push us to our limits with adventure and excitement.
Kinari went on a big trip to Japan with our mum to mark the tenth anniversary of her diagnosis – her way of saying ‘I can do it’. Continued >>>
Patience is key, and time is precious
Although it took quite a bit out of her, and having to fly her pump and spare medication across the world wasn’t simple, it was memorable for them both. Some days are easier than others for my sister. Some days she just can’t get out of bed and there are other days when the
world will see her as being very well – but as her family, we can see the true picture.
My parents have been very dedicated in terms of their care for Kinari, and it’s been tough for them at times. People see the patient, but they never see the hive of activity that goes on behind to prop them up.
In terms of strength, for me, it comes from being able to step away and go and talk to my friends. Because they are friends with both of us, they see things from both sides. I’ve also got my own career, and I take time out through cycling and other activities which allow me to have that mental capacity to come back and have a bit of positive energy to bring back into the house.
People see the patient, but they never see the hive of activity that goes on behind to prop them up
For anyone who is at the start of their journey to support someone recently diagnosed with PH, I would say that patience is key, and time is precious. It is a journey, and if I was to summarise, I would say: You’ve just got to keep cycling on.
You're only able to help those around you when you have looked after yourself, and I needed to find time for myself to better support my sister. With everything going on, sometimes you can forget about your own bit of the world – and that’s where cycling came in for me.
It initially became a lockdown habit, as a way of getting of the house and ensuring I got some space.
Cycling allows me to have some fresh air and breathing space, to reset, and give me time to think: ‘What do I need to do for me? What do I need to do around the house? What do I need to do for her? How does that all form together?’
I can set myself a cycling distance, and a time to work towards, and it helps give me a sense of control as at least I can control that variable. What I can’t do is control how Kinari’s condition is progressing, or how she is feeling from one day to the next.
I decided to take on the London to Brighton Bike Ride event in June to raise
Neer raised over £2,200 from his cycling challenge, with his employers Lloyds of London donating £1,000 towards the total.
awareness of PH, as well as money for the PHA UK. It’s been ten years since my sister was diagnosed, which is an incredible achievement, so I wanted to mark that in a very special way through the challenge. I wasn’t expecting to raise so much money, and I think it just goes to show that with great purpose, and for a great cause, you can achieve a lot.
Go purple for PH all year round with our new range of merchandise
20% from every sale goes directly to our charity
Hooded jumpers
£30
Cotton t-shirts £15
Activewear t-shirts £20
All available in male and female sizing up to XXL, in a choice of two colourways
All prices include P&P!
Friendship bracelets just £8 each (buy two for £12)
Enamel pin badges just £3
Scan to see the range and order nowwww.phauk.org/merchandise
Members of our Feedback Forum and Research Forum panels play a key role in helping to guide PHA UK activities and contribute to important research work.
We contact all forum members with opportunities via email, and it is up to you whether you respond. We appreciate that PH comes with bad days so we understand if you need to give some of our invitations a miss. If it’s not for you at that time, simply ignore the email and look out for the next! GET INVOLVED IN YOUR OWN TIME, FROM THE COMFORT OF YOUR OWN HOME.
Whether it’s a booklet, poster, video, or web page, we need to be sure that it meets the needs of the PH community.
That’s why we’re building a mix of people affected by PH - patients, and their loved ones too - to give us feedback on new materials before they are launched. Your opinions are really important, and they help us make sure we’re getting things right.
As part of our Feedback Forum, we’ll ask you to spend a little time reviewing our materials before they are launched. This may be in the form of reading a leaflet, watching a short video, or having a look at a web page.
You will then be asked to fill in an online form with your thoughts. Sometimes, we may ask your thoughts on an idea for a campaign or project during the planning stages, to ensure we are taking things in the right direction.
Join at www.bit.ly/PHAUKfeedbackforum
There’s never been a more important time to lend your voice and experiences to PH research. As well as conducting our own studies to help people affected by PH live better lives, we are regularly approached by researchers from healthcare and academia, who recognise the importance of the patient voice.
Our Research Forum is for patients and loved ones or carers who would be willing to help with these studies when possible.
They often involve completing surveys or questionnaires, and sometimes they may involve online or telephone chats, or focus groups. Occasionally, you may receive an invitation to be involved in a different type of study, but it is unlikely you will be asked to take part in a clinical trial in this way.
Join at www.bit.ly/ResearchForum_PHAUK
“The journey through illness was, and is, full of beautiful things and people”
With my family in Scotland
Emilia Ferraro has had her fair share of challenges. Diagnosed with pulmonary hypertension three years after losing her left leg, the university researcher has overcome adversity to return to work in Ecuador – a place that, despite the altitude, holds a very special place in her heart. Emilia, who now lives in St. Andrews in Scotland, explains more about her extraordinary journey and why she feels so much richer for what she’s been through…
M y life changed massively in 2016 when I had my left leg amputated due to vascular problems. It was taken just below the knee, and it was a major trauma. Although I had imagined a lot of things might happen in my life, I never imagined I’d need an amputation. It changed me forever, and at the time it felt like a tsunami that came along and swept everything away.
I was unable to work for a while after the amputation, so my husband Juan had to accept a job in Ecuador, where he is from. It was hard leaving my children, who were studying in Scotland, but I spent time travelling back and forth to the UK.
In 2017 I started to become breathless and in November 2018, I flew back to Scotland for what I thought would be six weeks. I ended
up staying for four years, because I became so unwell.
In May 2019, my symptoms were confirmed as chronic thromboembolic pulmonary hypertension (CTEPH). After the trauma of losing my leg, it felt like something else that was really cruel. The vascular problems that led to the amputation of my leg and the CTEPH are linked – but it’s not clear which influenced which.
As a researcher in arts and humanities, I’ve spent much of my life working on projects in Ecuador and one of the hardest things about being diagnosed with CTEPH was that it stopped me going back there. Continued>>
The country's capital city, Quito, where I usually go, is 2,800 metres above sea level, and the altitude causes the symptoms of PH to worsen significantly. When I was first diagnosed, I was told I couldn’t even travel to Italy, where my family live. So it was a really, really difficult time.
I wasn’t prepared for being in Scotland on my own, without a job. I had only intended to visit for six weeks. Ecuador felt like home to me, and it was where I had developed all of my research as an academic. It was extremely difficult to accept that I could never go back, and those were the worst months of my entire life.
I was staying on my own in a small flat (Juan had to stay in Ecuador for work) and although my children would visit at weekends, most of the time I was on my own, spending my days just trying to breathe.
It felt like there was no end to the bad things that were happening. I wasn’t even able to make my own bed, and simply meeting a friend for a coffee took so much effort that it took all the pleasure away. I would see less and less people just because I didn’t feel like I had any energy. I had no quality of life at all.
When pulmonary endarterectomy (PTE) surgery to try to clear the clots that were causing my CTEPH was first suggested, my initial reaction was ‘no way’. But I soon realised that the life I was living wasn’t really a life, and so I agreed to have the operation.
I decided to have the surgery in Italy, where I lived before moving to the UK 20 years ago. My extended family are still there, and I thought that if I didn’t make it, my husband and children would have people around for support.
I had the PTE in August 2019, then returned to the UK in early 2020, again for what I thought would be a few weeks to spend time with our children. However, the pandemic hit us and left us ‘stranded’ in Scotland.
After a while, it became urgent that one of us found a job, so in July 2020, I took a role at a university. Then, in May 2022, CTEPH was re-diagnosed I’d been successful in applying for a research grant to do some work over in Ecuador, so my PH team carried out some tests to make sure I would cope with the altitude; and the results showed that my pulmonary pressures had gone back up.
"I’m so grateful for the support that helped me get back to Ecuador and I feel so much hope for the future now"
This wasn’t linked to new clots; it’s known as ‘distal CTEPH’, where damaged capillaries in the periphery of my lungs, where the surgery can’t reach, were causing the pressures.
The point is that CTEPH had come back, although nowhere near as bad as it was before the surgery. Although I’m still a patient with CTEPH, it’s incomparable to what I had before, or to my situation before the surgery. However, I had to accept that going back to live in Ecuador permanently is just not possible – so it was really important for me to visit.
I was put onto medication, which I still take today, and my specialist centre team put an oxygen plan together for my trip. They knew how important it was for me to return.
I was fitted with a prosthetic after my leg amputation and although walking is no longer a pleasure, and I have to stop and rest it often, I can get around.
So, making my way around the country wasn’t a concern.
Unfortunately, a month into my time back in Ecuador, I had a problem with my gallbladder and had to undergo emergency surgery, with lots of complications. It took me a year to recover from it back in Scotland.
This summer, I decided to give Ecuador another try. I returned partly for my academic research, but also to see whether the country was still an open door for me in general. We have family and friends there, so in many ways it feels like home.
I was very anxious about going back, but it all went well. I could feel the altitude, but the symptoms were manageable. It gave me back my confidence in Ecuador. I used oxygen at night, or if I’d given lots of talks during my working day, and I felt like I had a good network of support.
One trip I took whilst over there this summer was particularly special. Oyacachi is an ancient village 3,500 metres above sea level, and you have to cross part of the Andes mountains to reach it. I took my oxygen, and some friends - who included a doctor - and off we went.
I took a photo of myself at the highest point, showing the altitude, and sent it to my PH specialist back in Glasgow (pictured left).
I did use oxygen, but it didn’t stop it being a really special day. I’d visited once before, prior to my illness, and it was an absolute delight to be there again.
I’m so grateful for the support that helped me get back to Ecuador and I feel so much hope for the future now. I’ve worked a lot on myself over the last few years, especially in terms of acceptance, and I see everything that’s happened as a learning experience. The journey through illness was, and is, full of beautiful things and people... I feel richer from it all.
You never forget the things that have happened, and I won’t ever forget how it felt to have to learn to walk again, or to learn to take a breath. What has become evident through all of this is
that ordinary things can actually be quite extraordinary. I do appreciate ordinary life much more than I used to.
I will always remember how it felt to be able to wear two shoes and tie my laces again after having the prosthetic leg fitted, and how it felt to be able to dress myself properly after I had recovered from the PTE. Before the surgery, it was just too much effort.
I’m grateful for the care I’ve received here in the UK for my PH. The team at the Scottish Pulmonary Vascular Unit (Golden Jubilee National Hospital) have this philosophy that they will do anything they can to support me having as normal a life as I can with a chronic, progressive condition. That’s an approach to illness that I’ve never come across before, and I come from a family of doctors.
"My PH team don’t encourage me to ignore my limits...but I’ve found they foster an encouraging environment for me"
People in general seem to concentrate much more on the disease rather than on living well with this condition, so it feels many healthcare professionals focus on the limitations, rather than what we can enjoy where we are.
My PH team don’t encourage me to ignore my limits - because I do have them - but I’ve found they foster an encouraging environment for me to continue to (responsibly) push myself forward.
I don’t feel disabled. I have limitations; we all have. But in all honesty, I feel far, far richer than I did at the start of my journey with all of this.
Consultant Pharmacist Dr Neil Hamilton has over two decades of experience in pulmonary hypertension, and his expert advice has been gracing the pages of this magazine for almost ten years.
QWelcome to another issue of Emphasis, Neil! Can you tell our readers a bit about where you work, and what you do?
AI’m the Consultant Pharmacist at the Sheffield Pulmonary Vascular Disease Unit (SPVDU), based at the Royal Hallamshire Hospital in Sheffield. I’ve been a consultant there for almost nine years, but I started as a pharmacist working in PH in 2003 – which seems like an awfully long time ago now!
The pharmacy team has a grown a lot since then. When I first started it was just me, but now there are four of us; myself as a consultant, a second pharmacist who works both clinically and in research, and two pharmacy technicians who provide really important support.
As a team of four we look after medication for over 2000 people with PH. So it’s a very busy role, but very rewarding too.
As a pharmacy team we are involved in ward rounds, and in clinic, so we see inpatients and outpatients alongside the nursing and clinical staff. We play a vital role in looking after everyone under the care of the SPVDU.
Not all of the UK’s specialist PH centres have a designated pharmacy team like ours, so it’s nice to be part of something that’s so advanced. It would be great for patients if all the centres had a specialist pharmacist so that’s something I’d love to see.
As well as looking after inpatients at the unit we manage all the homecare delivery prescriptions for outpatients too, and we’re a direct point of contact for patients and
their families around anything to do with their medicines. They can speak to us about anything they need to.
QYou have roles outside of the hospital too, don’t you?
AI do. One of them involves sitting on an NHS England specialist respiratory clinical reference group (CRG). This is a committee board which is made up of professionals in the field who help guide decisions around policy and standards of care. and access to new medicines. It’s quite different from my day-to-day role as it has more of a national remit. I am an advisor to the PHA UK, so I provide information and advice about treatments that is passed on to the PH community, and I also promote their work and their objectives wherever I can – for example, through the work I do with the NHS England clinical reference group. In this respect I see myself as both an advocate and an advisor.
I also work closely with the PHA UK through my role as Chair of the PH Professionals Group. Members of the PH Professionals Group include nurses, pharmacists, technicians, physiotherapists, and psychologists, and we meet twice a year (with other interactions in-between) to share best practice, help each other with advice, and ensure we take a united approach to challenges.
The group has representatives from all the specialist PH centres around the UK, and it’s open to anyone who is not a doctor (they have their own group, the PH Physician’s Group, which has similar objectives). The PHA UK support the group through secretarial duties.
Ultimately, the group is another way of ensuring we are all working together to do the best we can for our patients, wherever they are seen.
The group has really blossomed over the ten years it has been going, and the PHA UK has played a key role in that by organising the meetings and supporting our connections and collaborations.
The PHA UK has a strong global reputation and I’m proud to be involved with the charity. I’ve really enjoyed writing my column for this magazine over the years; it’s such a strong publication with a wide variety of content, and I hope my
collaborate discuss develop
advice in it has helped people. I’m not going anywhere, so there will be plenty more to come!
QYou’ve been around a long time (although you don’t look a day over 21, of course). What are the biggest changes you’ve seen in PH medicines over the years – and what are the next changes likely to be?
AThere have been some huge advances,
time to be involved in pulmonary hypertension treatment.
field, in the early 2000s, we only had a very small number of patients on intravenous (IV) therapy – before the days of oral medications to treat PH. Now, most take oral treatments for PH and as well as many more people on IV therapy, we have nebulised treatments and subcutaneous (under-the-skin) infusions too.
All these treatments manage the symptoms of PH and although they may slow progression of the disease, ultimately, they do not modify the disease. And that’s where we hope treatments will be going soon.
We’re also starting to learn more about how we can better personalise the sort of treatments and prescriptions we can offer patients, rather than having a ‘blanket’ approach. So, there is
Look out for advice from Neil in the next issue of this magazine. You can find previous articles by accessing all the back issues of Emphasis at
“The PHA UK has a strong global reputation and I’m proud to be involved with the charity”
Following a successful trial, this new self-help programme is now available to all…
Developed by psychologists, and supported by the PHA UK, this is the world’s first self-help programme specifically for people with pulmonary hypertension.
This four-week programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT), to help you change your thinking habits and behaviours, and develop skills to manage your depression or low mood. You can work through them in your own time and in your own home
We’ve made this programme free to anyone in the UK affected by PH, to help as many people as possible.
This programme is backed by research…
This programme was developed and tested as part of a PhD study carried out by Dr Abbie Stark - who at the time was a trainee psychologist at Cardiff University. The study took place in 2022 and 2023 and tested the effectiveness of the intervention with a group of participants who all had PH alongside living with depression or low mood.
The group was split into two, with half completing this programme. Clinical measures were used to assess levels of depression in both groups, to see whether
working through this programme made a difference. Findings showed a significant reduction in depression in the group who completed this programme, compared to those who didn’t.
Ofthosewho
87%
participatedinthestud y …
73%
87% said the programme was ‘good’ or ‘excellent’ rated the booklets as ‘very’ or ‘extremely’ helpful overall
said they valued that the programme is specific to pulmonary hypertension
“The self-help intervention gave useful strategies to help maintain my mental health and to make sure I am doing what I need to do to support my physical and mental health.”
“I was able to make this journey on my own in the privacy of my own home and that helped to intensify my sense of achievement.”
“It enabled me to think about how my depression is affecting other parts of my life and reinforcing the cycle of depression.”
“This intervention helped me to take control of the things which I could change and to accept what was outside my direct control. It taught me how to change my negative thoughts and reactions to adverse situations.”
Order the programme for free by scanning this code or visiting phauk.org/HelpForDepression
A similar self-help programme is available for people with PH who live with worry and anxiety
Find out more on page 40.
This series was written by Dr Gregg Rawlings, Dr Abbie Stark, Dr James Gregory, Dr Iain Armstrong and Professor Andrew Thompson. This series of four booklets has been produced in collaboration with the University of Sheffield, University of Cardiff and Vale University Health Board and Pulmonary Hypertension Association UK (PHA UK).
1. Stollen Christmas cake originated in which country?
2. Which group had three consecutive Christmas UK no 1 singles in the 1990s ?
3. Which Union was dissolved on Boxing Day 1991?
4. What is the main feature of Rudolph the Reindeer?
5. Who were Melchoir, Caspar and Balthazar?
6. Who duetted with Bing Crosby on the Christmas hit The Little Drummer Boy?
7. Which country donates a Christmas tree for Trafalgar Square every year?
8. Who lived in a cave in Whoville?
9. Who wrote the 1991 animated film Father Christmas?
10. In which town was Jesus born in a stable?
PHA UK member Rob Owens has been writing quizzes for friends since he gave up work following a diagnosis of pulmonary hypertension. He’s provided this festive-themed brain-buster for Emphasis readers to enjoy with loved ones. Mulled wine & mince pies at half-time are optional! ? ? ? ? ?
11. What was the official no1 Christmas single of 2023?
12. Which silver coin was traditionally hidden in a Christmas pudding?
13. In A Christmas Carol, how many ghosts visited Scrooge?
14. How many Lords were leaping in the song The Twelve Days of Christmas?
15. In what decade were The Teletubbies the bestselling Christmas toy?
16. Tom Smith invented what traditional Christmas novelty?
17. A cryptic question! Which late playwright/ composer’s name could mean Christmas and scared?
18. The Griswolds were characters in which Christmas film?
19. Who played The Grinch in the original first movie?
20. Who played Buddy in the film Elf?
When Chris Casey was diagnosed with PH four years ago, he fell into a deep depression that affected both his body and mind. Since then, he has shed five stones, become a grandfather, and met and married the love of his life. This is Chris’s story of making changes and proving anything is possible – even when everything feels hopeless…
One day in 2020, I blacked out whilst dragging the dustbin down my long drive, and that’s what started the road to my diagnosis.
I weighed around 16.5 stones when I was told I had PH and doctors placed me on triple therapy and 24/7 oxygen. I was advised by my specialist centre consultant to lose weight from the start, but instead of losing it, I put even more on.
I got up to over 19 stones because all I did was sit at home and eat. I was in a complete depression and never left the house. My eyes were red and bloodshot all the time and I looked like an absolute mess.
I just gave up when I got my diagnosis. I locked myself away and cut myself off from people. I’m not sure what the turning point was for me really, but one day I just decided I needed to do something.
I started dieting and I lost three stones in five months. I completely cut out cakes, biscuits, sweets and chocolates. I had cereal for breakfast, and I ate a lot of salads; I didn’t follow a complicated regime.
I got nutritional advice from
my dad, as he’s always been into fitness and nutrition, but to be honest, I didn’t need telling what I shouldn’t be eating. I’d open a packet of biscuits and eat the whole lot, and I knew that was wrong.
I also started introducing exercise, with the blessing of my specialist centre. I started with 15–20-minute walks, with my oxygen, and gradually built it up.
As I lost weight and increased my fitness, the oxygen nurses were dropping my prescription.
The more weight I lost, the more motivated I was to continue, and it all helped me feel better in my mind too. I lost around six stones in total.
I got married to my wife Claire in July 2024. We went to school together, but she only came back into my life a few years ago, after I was diagnosed with PH.
It was during my down days, soon after diagnosis, when I put a post on Facebook moaning about something. She responded, asking if we could meet for a coffee, and she has told me since that she was worried by the message and thought I needed someone to talk to. It all went from there, and she has definitely helped me along my journey.
We got engaged nine months after meeting up and married 18 months later. During those dark days, I could never have imagined that I would be getting married in just two years’ time.
Most of the reason I was hiding myself away was because I looked a mess. I just didn’t want to go out. But when I started losing weight, it began to give me more confidence.
I definitely feel like my mindset around nutrition has changed and I’m not finished yet; I want to get down to 12 stone. I haven’t bought a packet of biscuits in three years. I did eat too much of my wedding cake, but I don’t want to spend my whole life on a diet. You’ve got to have some fun as well!
My granddaughter Brooklyn was born two-and-a-half years ago and she came along at a good time for our family. She never sits still, and because I’m now fitter, I can enjoy more
quality time with her. I do know my limitations, so Claire will often do all the running around after her, but I do pick her up and carry her and play with her.
I’m still poorly and things can still feel like hard work, but life does look very different compared to when I was first diagnosed with PH. I’ve opened myself up to life again and reconnecting with people made a big difference.
his
loss
“It's been a pleasure for Lucideon to support the work of the PHA UK over the last three years”
International materials technology business Lucideon has made generous donations to our organistaion, as part of a charity partnership with its director’s car club. Noor Ali is the Chair of Classic Marques Sports Car Club (CMSCC), who have supported us through their last three seasons in memory of someone close to the team. He tells us more about his organisation, and why you may be closer to their products than you think…
“Our ethos at Lucideon is to ‘make the world a materially better place’ and we do this by helping clients develop new ceramic, metallic, polymer, composite materials, and consumer formulations, as well as providing production and support through our extensive laboratory facilities.
We are one of those companies that you've likely never heard of, but you will almost be guaranteed to have used or benefitted from products that we have developed or help develop for companies.
The nature of our work means it's very confidential, but if you have had a hip or knee replacement, if you have used shampoo or toothpaste, had a stent fitted, used some house bricks for a DIY project, or drank from a ceramic mug, then Lucideon is highly likely to have been involved.
We also do work in the nuclear power, defence, and aerospace sectors - to help keep aircraft in the sky, develop the next generation of nuclear reactors and
help ensure the future security of the UK and the US.
Lucideon has a strong set of values and one of the consistent messages from colleagues throughout the business is that we make a difference to the world around us in the work that we do. Our scientists are as excited about our projects as our customers are! Extending that to areas such as charitable donations reinforces those values and is greatly appreciated by our staff.
I am the Chair of Classic Marques Sports Car Club and a competitor in their championship, so it's important that I lead the way both through both personal donation and also by gaining support for an annual donation to the Classic Marques charity of choice. It's been a pleasure for Lucideon to support the work of the PHA UK over the last three years.”
Noor racing in his car (spotthePHAUKsticker!)
We are hugely grateful to both Lucideon and Classic Marques Sports Car Club for their committed and kind support of our charity over the last few years.
Meet nurse John Harrington, Ward Manager at the Sheffield Pulmonary Vascular Disease Unit...
I’m responsible for the day-to-day running of the PH ward at the Royal Hallamshire Hospital. We’re a regional pulmonary hypertension unit so we have an outpatient area and 16 beds on the ward, and it’s my role to look after the staffing and make sure patients get the best experience. I do my best to ensure everything runs smoothly, and I deal with any problems when needed.
As Ward Manager, I have to do a lot behind-the-scenes in the office. But the best bit of my job is definitely being able to get out onto the ward to care for patients, so I try and do that as much as I can.
"I do my best to make everyuthingsure runs smoothly"
Every aspect of my job is rewarding, because we are such a great team in Sheffield. We all give our best, and I love seeing our patients get high quality care at whatever stage of the PH journey they are on.
I’ve been in my current role for five years and things have changed a lot in that time. As well as treatments developing, we have a lot more ‘remote’ contact with patients now, via telephone or video call, and things are more streamlined now.
When it comes to the hospital vending machine, I’m a Pepsi Max boy. It used to be chocolate, but I try and be good these days…
John took on the Florence Marathon for our charity on 24th November, in support of his patients and everyone affected by PH.
Thank you to everyone who sponsored his efforts.
On a training run
Our Listening Line support service gives you dedicated time with a PH professional to talk through any worries or concerns you have relating to your emotional or mental wellbeing.
Speaking to someone who already understands PH means you don’t have to explain the condition first, and this service is available to family and friends too.
Find out more or book a telephone chat by emailing listeningline@phauk.org or visiting www.bit.ly/ListeningLine
“Paul’s support lifted me. He was so understanding and supportive, and it was helpful to chat with someone who knows about this disease.”
PHA UK member
Our e-support service is as valuable as a helpline, but delivered via email instead. We can help with ongoing emails to support you through a difficult time, or with one-off enquiries or problem-solving.
Contact us at support@phauk.org at any time and we’ll get back to you within two working days.
“I'm so grateful to have this chance to email as I'm hearing impaired” E-support service user
An outpouring of love in support of 11-year-old Quinn Cattermole has raised thousands for our charity and brought huge comfort to her family. Here, her parents Anna and Jamie share their story and celebrate their inspiring daughter.
Quinn was diagnosed with idiopathic pulmonary arterial hypertension in January, and it’s been a lot for us all to get our heads around.
She was born prematurely at 25 weeks and spent her first six months in hospital. She was then on home oxygen for two years, and she’s always been quite breathless. But as much as doctors said her lungs would never necessarily get better, they were never supposed to get worse.
Over the last year before her diagnosis, she started getting breathless simply going up the stairs, and her lips started going blue.
"We’ve had so much support from family and friends."
Doctors just put it down to having chronic lung disease when she was born and we were told she needed to do more exercise. She was put on different inhalers and medication for asthma, but they didn’t make a difference.
Everything came to a head in January this year (2024) when an echocardiogram showed her heart was enlarged. Things got very serious very quickly.
She was put straight into intensive care and then transferred to Great Ormond Street Children’s Hospital (GOSH), where we were told her diagnosis.
She was started on oral medication but very quickly this progressed onto epoprostenol via a Hickman line.
Quinn isn’t remotely phased by having the line in or having the pump bag all the time.
She’s taken to it like a duck to water and she’s got so much more energy now. Despite all the invasive tests, and all the medications, she just gets on with
things and she always puts a positive spin on everything.
She’s got global developmental delay with her muscles, so physical activity has always been a bit of a struggle for her, but she is so determined and has such a positive attitude. Quinn loves doing martial arts - it’s one of her favourite things in the world - and the people who take the classes have been fantastic in accommodating her needs.
Quinn and her little sister Joni, seven, are super close. They want to be together all of the time and Joni has been amazing through everything over the last year.
She’s a little old soul; she wants to know everything, and she can tell you exactly what prescription her sister is on. We don’t try to hide anything from her, and she takes it all in and processes it all incredibly. Obviously, she gets worried and upset by her sister being ill but she’s handling it phenomenally. We’re so proud of both of them. We’ve had so much support from family and friends. Both sides of our family are spread out but we’re really close to them, and we have a big group
of friends we’ve both known since school. When we were in the hospital so many people came to visit Quinn. We’ve never felt on our own, and the team at GOSH have been brilliant. Quinn sees them almost as friends.
It sounds like a cliché, but one of the biggest things we’ve learned as parents over the last year is to take everything one step at a time. You can’t let the fear you feel take over your life. You can’t control what happens in the future; all you can do is pay attention to what the medical professionals tell you and do the best you can.
Today, in herself, Quinn is better than she’s been for a long time – and we’re so grateful for that.
Our best advice to other parents dealing with a diagnosis is to take it all as it comes and focus on what you can do as a family, rather than what you can’t. Thinking too far ahead is difficult, so focus on making the most of the present. It was a long road for us to have children in the first place, so we’ve always been appreciative of every second with them – and even more so now.
Our best advice to other parents dealing with a diagnosis is to take it all as it comes and focus what you can do as a family, rather than what you can’t.
Friends of the Cattermoles went to huge efforts over the summer to raise money in support of Quinn.
A family fun day, brilliantly named ‘Quinnfest’, brought almost 1000 people together at a rugby club in Pembroke. Families enjoyed carnival games, inflatables, live music, arts and crafts, food and drink, and sunshine – with lots of awareness of PH raised at the same time.
The day before, eight of the Cattermoles’ friends and family saddled up to cycle 55 miles between nine castles in South Wales, gathering sponsorship and donning ‘Spin for Quinn’ t-shirts as they pedalled.
The final part of the fundraising trilogy saw stationary exercise bikes set up in the foyer of a busy Asda supermarket, along with an information stand to help the public understand more about PH. Friends and family took turns on the bikes and donations were collected throughout the day.
The outstanding efforts resulted in £9,000 being raised for our charity, which was match-funded by an employer for a staggering total of £18,000!
James Thomas played a lead role in organising the fundraising events in support of his niece. Quinn’s diagnosis has changed not only Quinn’s life but the family unit as a whole. We are a very close family, and this news has obviously been extremely difficult to process and is something we are still very much in the process of coming to terms with.
Quinn herself has been nothing short of incredible over these past few months. She is sunshine, and she has been brave and resilient in ways no 11-year-old should have to be.
Her Mum and Dad, Anna and Jamie, and her little
sister Joni, have been the strongest family around her, giving her everything she needs in such difficult times. Words don’t do their love, courage and support the credit they deserve.
We cannot say a big enough thank you to every person that donated, attended, cycled, organised, promoted, shifted, lifted and supported in every way possible. It was truly a team effort and the support and help that PHA UK have given us along our fundraising journey has been amazing. We are just thrilled that we have been able to raise the money that we have, and one thing that cannot be understated is the outpouring of love we have had around us over the last few months.
Our regular space for children with PH
How to say in 4 different languages!
Merry Chrimbo everyone!
Italian: 'Buon Natale' Portuguese:'Feliz Natal'
Swedish: 'God Jul'
Can you find all of Santa’s reindeer?
The 9 names are hiding in here somewhere!
(Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donner, Blitzen, and Rudolph)
Coco Praest, 10, started treatment for PH when she was 5 months old. In her new Kids Corner column, she tells us all about her latest trip to Denmark.
Every year, I go to Denmark to see my grandad (or Farfar in Danish - Far means dad and Farfar means dad’s dad) who lives in Esbjerg.
Denmark is known for Danish pastries, the invention of Lego, the Vikings, bicycles and hygge (cosiness). Denmark is located in Northern Europe, not far from Sweden and Germany. Usually I need oxygen for the flight but this time I didn’t need it, which made me happy. For a change we went to Copenhagen, the capital of Denmark, first and spent five nights there in a flat.
a tropical rainforest and lots of tanks, even ones you could put your hands into! My favourite tank was one where tiny fishes nibbled your hands! In the tropical rainforest part, there were sloths.I liked them.
The next day we went to the Experimentarium, which is a hands-on, spread over three floors, science museum, that you can play in with your family! We did lots of challenges as a family. My favourite was the Pulse Plaza. We tried The Rodeo Lounge, The Obstacle Hallway, The Energy Wheel, The Dance Bathroom and The Bike Shed, which were all really fun! There was even a brainwave machine, I played against my twin sister Aika. The Labyrinth of Light was also a cool place. I like the frozen shadow wall.
On day one, we went to Den Blå Planet and it was my favourite part of the whole trip! It is the largest aquarium in Northern Europe and has 7 million litres of water, thousands of sea creatures as well as sea otters, frogs and more! They have a water play area,
On the third day we went to Tivoli gardens. It is one of the oldest amusement parks in the world! We won two toys at the games Hook a Duck and Hoop on a Swan. I enjoyed these rides: The Astronomer, The Ferris Wheel, The Flying Trunk, The Little Dragon, The Classic Carousel, The Dragon Boats, The Vintage Cars, The Temple Tower and The Bumper Cars. In the Tivoli food hall, I ordered some sushi and a chocolate for dessert!
Continued overleaf
Enjoying the cargo bikes
On the fourth day, we rented a cargo bike and cycled to Amager Beach. A cargo bike is a bike that has a basket at the front to carry things or people. At the beach, we had a picnic with delicious ice cream.
Early the next morning we caught the train to Esbjerg. It took three hours, but eventually we were there. Aika and I were overjoyed to see Farfar and liked staying at his house. We went to our Auntie Anna’s and Uncle Peter’s house for a barbecue and we cooked special bread on the fire called Snobrød. It was yummy!
We even spent a few nights at Rømø in Farfar’s summer house. Rømø is an island with beautiful beaches. The garden around Farfar’s summer house is very wide and sandy. There are lots of animals like frogs and once we even saw a starling murmuration (which is a flock of starlings flying together)! We had calamari, fish and chips for lunch by the harbour.
Denmark is a great country, I love it there! You should go on a holiday to Denmark!
Farfar's
summer house
Gifts in Wills help us continue our work to support people affected by PH – making a huge difference to those dealing with this challenging disease. Could you or your family consider thinking of the PHA UK in this very special way?
Legacies, however small, play a critical role in supporting our work and securing the future of our charity.
“I updated my Will recently and decided to include the PHA UK as a way of giving something back for all the support I’ve received. It feels like a thank you from me and my family and it will help them to continue their work to help others.”
Julie, PHA UK member since 2012
Scan to find out more about gifts in Wills or visit phauk.org/RememberingOurCharity
Thank you so much.
Our free self-help programme has been developed with psychologists specifically for people with pulmonary hypertension – and 100% of those who tested it said it helped with their anxiety. Based on Cognitive Behavioural Therapy (CBT)
Complete the workbooks at home
Work through them in your own time
Benefits Calculator
Find out what you might be able to apply for by answering questions about your personal circumstances. phauk.org/BenefitsCalculator
Grant Search
Discover what supportive grants may be available to you and your family. phauk.org/GrantsSearch
Personal Independence Payment (PIP) Helper
Walk through the PIP application process step by step, access tips and checklists, and more. bit.ly/PIPhelper
Alysha Sharma didn’t want to go onto intravenous medication, but she’s spent the last year learning to accept her pump – and even to see it as a friend. Read her words over the page >>>
Iwas diagnosed with PAH in 2018 and spent five years on oral medications. I thought going onto IV would never happen, not to me, but it got to a point where either I lived with severe symptoms, or I tried something that might give me a better quality of life.
It wasn’t an easy decision, but I transitioned onto IV at the end of October 2023, ironically on Halloween.
For six months previously, my symptoms had got worse; I was getting more and more breathless, and a lot more fatigued, and so discussions started around changing my medication.
I was gutted when it was first mentioned, as I’d put it off for so long. I was concerned about having something attached to me; that was a big issue. As a young person, you’re generally able to do what you want without having to consider anything else, and the thought of having something attached to me was a lot to deal with.
I worried about sleeping with it, having it in the bed with me, and meeting someone special with it. I also had concerns about the procedure to have the line fitted, and how I would keep the site clean.
As well as talking about it all with my hospital I discussed things a lot with my mum, and we realised there were only two choices – carry on struggling, or try something different. My PH team were very good in explaining that if it didn’t work for me, I could come off it, and that helped with my decision to give it a go.
Once I’d had the line fitted, it was all about trying to adjust to a ‘new normal’.
I work as an occupational therapist and I’d been worried about how I would do the physical aspect my job with the
pump, but actually, I’ve managed quite well. I take every day at work as it comes, and if there’s something I’m unable to do, I just say.
I’ve had counselling (accessed privately) to help me come to terms with having the pump and the line, and that has helped me to accept things mentally. I’ve realised I either have to get on and use the pump as my best friend - because that’s really what it is - or I go back to having really bad symptoms.
I change the medication in my pump every two days and at first, it would take up to half an hour because it was all so new, and I wanted to get everything right. Now, I can do it in ten minutes, and I’ve learned that the best time to do it is just before bed, so the side effects occur whilst I’m asleep.
Talk about how you feel; communication is really important.
If anyone reading this is where I was a year ago, and worrying about going onto IV therapy, my top piece of advice would be to connect with people who are already on it and learn from their experiences.
I carry my pump around my waist, as I find that’s the easiest way for me. I do find it quite difficult with certain clothing; for example, with long-sleeve jumper dresses, there’s no way of getting the line out – so I do have to think about what I wear.
The pump is there to make me feel better, and whilst I wish it could be smaller, it is what it is.
I was really ill before going onto the IV medication and now I’m able to do a little bit more, and I’m not as fatigued. Despite the challenges, it has given be a better quality of life.
When I put new medication in, I do get side effects, so it’s swings and roundabouts, but you do have to take the good with the bad. And ultimately, being on IV is allowing me to do more.
A good friend is always there to support you, through the good times and the bad times, and I’m learning to see my pump as a friend that helps me through the bad ones.
If anyone reading this is where I was a year ago, and worrying about going onto IV therapy, my top piece of advice would be to connect with people who are already on it and learn from their experiences.
Talk about how you feel; communication is really important. Take on board all the training provided by your hospital, and don’t be afraid to ask questions.
Alysha with one of Sophie's ponies during her stay
Alysha shares her PH journey on Instagram, and you can follow her at @alyshasharmaph
The pair have been sharing their experiences with each other
After seeing PHA UK member Sophie Gloag share her IV experiences in the winter 2022 issue of this magazine, Alysha reached out to her via social media and the pair struck up a friendship that helped her come to terms with the changes.
Visiting Sophie at her home, Alysha also spoke to her family and boyfriend about day-to-day activities with the pump, and how to embrace life on a line
2024 marked 21 years of working in pulmonary hypertension for Carl Harries, now Lead Clinical Nurse in the Royal Brompton Hospital’s PH service. We caught up with him to hear his reflections of two decades of care…
QSo Carl, how did it all start for you?
AI joined the Royal Brompton Hospital in London to do specialist training in cardiac nursing, and I became really interested in congenital heart disease –which led to me seeing patients with PH alongside it. The deal was that after six months of training, you had to give six months back to the hospital as an employee – but over 20 years later, I’m still here!
Q You must have seen a lot of changes in PH care over the years?
AAbsolutely. It was all so different back when I started. We were already seeing patients with PH connected to congenital heart disease, but we started seeing more with idiopathic PH, and things have changed with each decade. As well as developments with drug treatments, care has moved forward in lots of other ways too. Patients are now able to have surgery that wouldn’t have been deemed safe before, because of the high risks from anaesthesia and PH. Procedures like gall bladder removal, eye surgery and dental extractions wouldn’t have been attempted when I first started out, but specialists such as anaesthetists and surgeons now have so much more experience with our patient group. And although the advice is very much still to avoid pregnancy with PH, we are now able to support patients through it if that is their choice. The high risk is still there - and we never underplay that - but we recognise it is personal choice.
Q You must be seeing lots more patients coming through the PH service these days…
A Numbers have grown massively over the last 21 years. In the beginning, the PH service here at the Brompton had less than 100 patients on treatment, and we now have nearly 1000. Back at the start we had to fight for funding for every single patient, and it was a painful period.
Q
How has the PH team at the hospital developed alongside these changes?
A It was just me back in the early 2000s, working very much as a ‘one-man-band’ to look after people with PH and congenital heart disease. A consultant would come in once a week, and I had support in the background if I needed it, but mostly it was just me. I was then able to secure funding for another Clinical Nurse Specialist to join the team, and now there are three of us, alongside doctors and a pharmacist. Service development has been a big focus for me over the last 21 years and I’m really proud of our cohesive team here – we have a proper nursing structure, which complements the consultant team, and we work together for patients as one. The addition of a pharmacist has been really important
“My colleagues in the service have helped keep me in PH for so long”
“For me, the PHA UK goes hand-in-hand with how I look after people with this condition”
too, and the service here would be nothing without our dedicated admin team. My colleagues in the service have helped keep me in PH for so long. There’s an emotional side to this role that can be really tough sometimes but the support we give to each other makes a huge difference.
The
patients as individuals. I tell them I will walk with them through their PH journey, and as a service we will help them through any challenges they may face. The door is never closed.
QYou’ve worked closely with us here at the PHA UK throughout your time in the field. What has the relationship meant for you?
AWithout the PHA UK, many patients would feel ‘in the dark’. The publications, the websites… all of the resources are so valuable, and I direct my patients to them every day. For me, the PHA UK goes hand-in-hand with how I look after people with this condition. I always encourage people to join, and to add their voice.
QShifting the focus to the future now, what do you think the next 21 years might hold for PH?
QAHow would you describe your own approach to PH care these days?
AMy emphasis is very much on helping people live well with the disease. Quality of life is so important and that’s what I focus on every day with my patients.
The use of the EmPHasis-10 quality of life measure [developed by the PHA UK and now used in PH care across the world] has been a really important development during my lifetime in PH.
I’m always realistic, especially when people have other conditions too, but it’s all about working with
Making a bid to become Minister for Health..!
In terms of treatments, we’re on the cusp of new forms of therapy that modify the disease rather than just treat the symptoms, and that’s exciting. We are still a long way from a cure - it’s important to be honest about that - but this new class of drugs will be a game-changer for the future if they can be made available. PH will still be chronic, but the hope is that patients can live better lives with the illness.
“Quality of life is so important and that’s what I focus on every day with my patients”
Chermaine Kwant is a registered dietician who lived with pulmonary hypertension before undergoing a lung transplant. She shares what a recent day of food looked like for her – and how you can recreate one of the meals for yourself…
This year, I’ve tried starting a vegetable garden on my balcony, and most of the vegetables I’ve eaten in the past few days have come from there.
I had rusks with farmer’s cheese and crackers with cream cheese, cucumber, and tomato. I focus on getting enough protein and vegetables with every meal - proteins for my immune system and strength, and the veggies for the minerals and fibre.
OUR REGULAR NUTRITION FEATURE TO HELP YOU MAKE THE MOST OF LIFE
WITH REAL PHOTOS OF CHERMAINE'S MEALS
I made a traditional Dutch dish called stamppot. This is made from a combination of potatoes mashed with vegetables and garnished with either sausages or meatballs (I chose meatballs).
To make it, you mash potatoes (preferably with butter or cream) and mix in either raw or cooked vegetables. I like a bit of crunch, so I usually go for raw, crispy veggies.
I made French onion soup. I absolutely love soups, but when you have PH do keep in mind that fluids count toward your daily intake. Unfortunately, the onions didn’t come from my balcony garden!
This time, I used purslane, a green leafy vegetable that I grew on my balcony. I’m not sure if you can get it in the UK, but it contains a surprisingly high amount of healthy fats.
An alternative could be crispy lettuce, spinach, or watercress.
What makes a typical Dutch stamppot so delicious is a bit of coarse mustard, gravy, and of course, a tasty meatball on top.
Find out more about Chermaine and her experiences of PH at phauk.org/MeetChermaine
PH researchers from around the UK gathered in November to share study findings, learn from each other’s work, and look to the future together…
Held at the Chelsea Physic Garden in London, the annual PH Research Forum brings together people working in important and wide-ranging areas of pulmonary hypertension research.
The event is now organised by the PHA UK, and it’s also attended by clinicians and nurses from specialist centres - who are keen to learn more about developments in research. The studies presented by researchers covered topics including persistence with prostanoid (IV) therapy, addressing delayed diagnosis, artificial intelligence, surgical outcomes, exercise testing, inflammation in PH, and much more.
PHA UK Chair Iain Armstrong (pictured below) also gave a thought-provoking talk about quality of life and showed extracts from videos produced with PHA UK members.
The Alan Greenhalgh Award was given to the presentation voted ‘best of the event’ by delegates.
Awarded in memory of research nurse Alan (pictured), who died earlier this year, the £1,000 grant was won by Renzi Su of Great Ormond Street Children’s Hospital for his presentation titled ‘Gene Ontology Curation and Multiomics Analysis in PH’.
Scan to hear from some of the people at the event in our short video.
Emily GravE nstede has lived with PH since sHe was a baby, and now 14, sHe since now is still E njoyinG sPorts by adaptinG what sHe does to accommodate HE r needs. to
PH can be very limiting, especially when it comes to sports. However, I really enjoy lots of sports and physical activities so here’s what I do and how I adapt things to make these sports work for me…
In school, we play badminton, which I enjoy. Luckily for me, we always play doubles so there is never much running to do because you only have to cover a quarter of the court.
I have been dancing for a very long time, so I’ve learned how to adapt it to make things easier for me. My dance teacher knows about my PH and will check up on me, but ultimately lets me decide when I need to do less. Sometimes if it’s an energetic dance, I’ll still do the same moves, but slightly smaller.
I haven’t been doing much swimming since I stopped lessons a few years ago. PH affects my swimming massively, yet I still enjoy it. I find it difficult to keep going because I get out of breath. I swam a lot on my holiday this summer and have really improved, and I’ve learned to relax more meaning I can swim further before having to stop to breathe.
Netball is a sport I really enjoy, and love to play. We do netball in school and I’ve joined an after-school club, even though I don’t play on the actual team. I usually play Goal Shooter or Goal Keeper which involves the least amount of running for me, and I will sometimes swap out if it’s too much.
I really hope this helps. I know PH can be different for everyone, but I find regular physical activity works for me. I even walk to and from school every day!
Emily walks to and from school every day
Do you enjoy sports or fitness with PH? Tell us how you make it work for you and we’ll share your experiences and tips with our community. Email media@phauk.org or send a WhatsApp message to 07375 354687
Now halfway through his temporary residency at London’s Royal Brompton Hospital, Australian doctor Chris Chew is understanding a lot more about PH care in the UK. The Senior Clinical Fellow in Interstitial Lung Disease and PH reflects on the last six months…
It’s hard to believe that I’ve now been living and working in London for over six months. My parents were both born in Malaysia, before moving to Australia to start their family. This makes me the product of two cultures and countries which have been immensely influenced by their time as British colonies. It’s little wonder, then, I’ve always had experiencing London and the United Kingdom for myself as an aspirational goal.
I can now say that the NHS has key strengths that should not be underestimated. I’d heard a lot about the challenges the National Health Service (NHS) is currently facing before coming here. There was much fanfare, for instance, when the Rt Hon Wes Streeting visited us last year to learn lessons from ‘looking down under’ at the Australian healthcare system. Yet for all this, I think that you’d be hard-pressed to find comparable concentrations of world-leading clinical and research expertise, build over many decades, to that here in the United Kingdom. The Royal Brompton Hospital where I’m working, for instance, was founded in 1841 – six decades before Australia became a federated country! Everyone that I’ve met so far, both in London and across the UK, has really been the very best and brightest.
There are some challenges which are quite similar to those we face in Australia. Given that the NHS is a single national system, I was surprised at how much of my time I’ve had to spend chasing down results and letters for patients from other hospitals. I’d have thought that it would have been easier for different hospitals and GP practices to talk to each other, especially since everyone has a single unifying NHS number! There are also definitely parts of the NHS that are clearly more under strain and are harder for both us and our patients to rely on – particularly GPs in primary care and the emergency departments.
I really admire the foundational ethos of the NHS – that access to good healthcare should be made universally affordable. I believe that healthcare should be a social good, not just another commodity to be bought and sold. When someone is unwell or ill, it’s really challenging to work or make a significant contribution to society, and so it affects all of us. The NHS is under strain, but it has been really inspiring to see in my day-to-day that these ideals still resonate. I’ve witnessed my colleagues - doctors, nurses and allied health - continuing to go above and beyond despite their own challenging life circumstances. And I’ve been touched to see so many courageous patients trustingly put themselves in our hands.
I’m looking forward to seeing what the next six months of my time here bring.
I’ve witnessed my colleagues continuing to go above and beyond
With sport off the table, columnist Raya Mynot has explored unique interests that don’t impact her pulmonary hypertension. This issue, she explains more about a hobby born of her love of photography – that has delivered more than she expected…
Over the years I have had loads of different hobbies and interests. With having PH I try to not let it stop me doing what I want to do, however there is definitely a limit when it comes to having hobbies.
As you can imagine, I can’t really do any sports (which I’ve never enjoyed anyway!), or anything that’s going to tire me out or be dangerous to my PH.
I’ve loved doing different crafts growing up. I enjoy crochet, colouring, embroidery, pottering painting, art and photography. The list goes on!
For this issue I wanted to tell you more about my favourite of all, which is also how I met my fiancée, Jade.
Ever since I was little, I have always adored baby dolls. I played with them right up until my nephew was born – when I was 15! Having a real baby around made me completely forget about them. I still adored them though and when my niece came along, I used to sit and play babies with her and my cousin. I even showed her my dolls that I had as a child as I never wanted to get rid of them so kept them safely in storage.
I soon discovered ‘Reborn Dolls’. I was in awe of them. These dolls are one of a kind hyper-realistic art dolls. They are sculpted completely by hand from clay, by a sculptor. Then they are made into a vinyl ‘kit’ which is essentially a completely blank canvas which then gets painted by an incredible artist, and even rooted with real hair sometimes.
“These dolls definitely aren’t for everyone… Not everyone is going to enjoy the same hobby and that’s okay!”
I started collecting Reborns in 2021 when I got in contact with an artist who painted me a custom baby. Collecting Reborns comes with so many other amazing things. There’s a whole community of people who also collect and I’ve made so many incredible friendships from them, not to mention meeting my fiancée Jade, which is crazy! I also created social media accounts to share my dolls on and they are doing
amazingly. I also love that I can collect baby clothes too as I’ve always adored baby fashion.
Jade and I now enjoy this hobby together. We love taking photos of our babies, and filming calming and aesthetic videos for our followers.
Reborns are used for so many reasons. Some enjoy using them as therapy as they are weighted with glass beads to make them feel like a real baby, and this can really comfort some people. Others just love the artwork behind them and collect for art and photography purposes, like me and Jade.
“Collecting Reborns comes with so many other amazing things”
Unfortunately, these dolls can be very expensive, which a lot of people don’t expect. They range in price from hundreds to thousands of pounds. A lot of collectors will buy and sell babies in order to collect the highest quality of Reborns. This includes Reborns that are prototypes (first ever kits made), Reborns that are painted by master artists from all over the world, and limited editions of the Reborns. So, I have bought and sold quite a few babies to get the collection I have today.
I currently have five in my collection. I also love giving them names too! They do already have a kit name but I love using really unique names and it makes my content feel more authentic. I currently have Brynn, Ottilie, Arden, Emerson and Evie.
These dolls definitely aren’t for everyone, and Jade and I have experienced a lot of hate on social media. But to me it’s something I enjoy, it’s a hobby that doesn’t make tired or feel unwell, and it’s also something I can still enjoy when I am unwell. Not everyone is going to enjoy the same hobby and that’s okay!
I really hope you have enjoyed reading about my Reborns because I’ve definitely enjoyed writing about them.
"I wanted a Reborn Doll that represented me and my journey with my medical conditions. When I was in hospital as a child the nurses would always make sure my baby doll had whatever I had so we could match. She would have a feeding tube and an IV lines like me. It was a way to make me feel less scared and it really helped. So, I wanted to be able to represent that in art form. I worked closely with an artist who custom-made Arden, pictured, for me. He even has a matching scar on his belly!"
You can see more of Raya and Jade’s photography by following their Instagram accounts: @x.raysofsunshine.x and @Jades.little.loves
Some people with PH do enjoy sport safely as a hobby – including our teenage columnist, Emily. Hear about her love for netball, badminton, swimming and dance on page 48
Scan to see the full library and order your copies, or visit phauk.org/publications
To mark PH Day UK, we supported six people living across the UK’s nations to tell their stories and help the public understand what it means to live with pulmonary hypertension. Hear from them all over the next few pages…
PH affects different people in different ways, and some, like Derek Coles, are able to live near-normal lives with the disease. The 78-year-old from Carrickfergus in Northern Ireland shared his story to show that every experience matters.
I had been breathless for some time, but it came to a head about ten years ago, when even simple tasks such as climbing the stairs became difficult. I was referred for tests in Belfast, and idiopathic pulmonary hypertension was confirmed. Luckily, the medication started working for me from day one. A couple of years later my wife died, so I moved from Northern Ireland to England to be near my son. I was seen by a specialist PH centre in London, and was told that rather than idiopathic PH, I actually had chronic thromboembolic pulmonary hypertension (CTEPH).
It was somewhat of a relief to get the idiopathic tag off it and give it the right name. But it hasn’t changed anything as far as the way I live and the way I take my medication.
I just keep doing what I'm doing. I keep taking my tablets and motoring on, back now in Northern Ireland. It’s always in the back of my mind that I’ve got limits which I didn’t think I had before, but while everything’s working, I’m happy. I do feel like one of the lucky ones. I know I was fortunate to get a fast diagnosis of PH, and the specialist care I receive is exceptional.
The medication I’m prescribed has reduced my symptoms sufficiently to allow me to live a near-normal life, and it’s not obvious to others that I have CTEPH. However, some others with this invisible disability are not so fortunate.
PH is a serious health condition that only a small percentage of the population has to suffer, so raising awareness of it is important – and not just among the general public. More healthcare professionals need to understand it too.
A year on from her heart and double lung transplant, Rebecca Brockbank is celebrating life and helping to raise awareness of both PH and organ donation. Here, the 48-year-old from South Yorkshire explains why.
I was stable for many, many years but around 2022 I suddenly deteriorated. I was exhausted, fatigued I could barely walk at all, and I was looking increasingly blue. I was really, really ill. I was admitted to the Sheffield Pulmonary Vascular Unit at the Royal Hallamshire Hospital and put on lots of different medications, but I wasn’t responding to any of them. I was told my only option for survival was a heart and double lung transplant, and I remember
feeling relieved that at least there was some hope.
After a few weeks in Sheffield, I was escalated from the ‘active’ to ‘urgent’ transplant list and transferred up to the Freeman Hospital in Newcastle – where I had the transplant just a couple of days later. I know how lucky I am that it happened so quickly.
When I woke up after the surgery, in October 2023, the first thing I noticed was that I could breathe, and that my
hands were pink instead of blue. It was amazing to realise I was alive.
A year later, I’m still building up my strength, but I can now go on long walks
With sisters (triplets) age 13 - Rebecca is in the middle
and my day-to-day activities are so much easier. I’m back at work as a part-time smoking cessation advisor and I’m feeling really well. I feel like I can finally join in with the world.
I know nothing about my donor (my hero) but I think of them and their family every day. Even though words don’t seem enough, I have sent the family an anonymous letter expressing my gratitude for the most wonderful gift, the gift of life.
Because of their brave and selfless decision, I now get to spend precious extra time with my family and friends, doing amazing things I could never do before and feeling healthier than I’ve ever been. Organ donation really is the ultimate legacy.
I’m telling my story because I want to raise awareness of the importance of organ donation and people sharing their wishes. Even though there is the opt-out scheme now, unless you communicate to your loved ones that you want to donate your organs, then it’s down to them to make that decision – at a really difficult time.
I also want to raise awareness of PH as living with an invisible illness was difficult. Just because someone looks well, it doesn’t mean they are.
And, I want to raise awareness of the fantastic work the PHA UK does too. I found the charity to be excellent in terms
of the resources and information they provide – it’s almost like you’ve got an invisible arm around you, so you’re not on your own with PH.
Ultimately, I hope my story will help people living with PH to have hope, whether they are facing transplant or not, as well as prompting the wider conversation about organ donation.
My husband, family and friends have been hugely supportive through everything, and I am so grateful to all the NHS staff who have provided my care and support over the years. Their commitment and dedication is inspirational, and I would encourage anyone thinking of working in healthcare to do so if they can.
The last year has been the most amazing yet profound experience of my life, both physically and emotionally. It’s hard to find the words. I’m now just looking forward to being able to do all the things I’ve not been able to do before, and to living a healthy, happy life with my family and friends. Every single day is a gift.
Scan to watch Rebecca share her story on camera
This was my first day home after the transplant, before I started to put weight on.
In Tynemouth in July 2024, the first time I could walk here with ease
Walking up a hill in Filey, summer 2024. I wouldn't have been able to do this before!
“You can’t always make people understand you, and that’s ok”
"I
Being diagnosed with PH has given Manchester-based Claire Lorenzilli a new perspective on life, which helps her deal with the challenges of having an invisible illness. She reflects on the battle to be believed, and explains why she no longer stresses about the small things…
Iwas told I had idiopathic pulmonary hypertension a year ago, and it took a long time to get there. I was getting increasingly breathless, but when I went to my GP, they just kept putting it down to anxiety – which I knew I didn’t have. I was even referred for psychotherapy, and I did everything I was told, but of course none of it made a difference to my symptoms.
It got to the point that I started blacking out, and every time it happened I would go to my local hospital, who would then refer me back to my GP. It was a vicious cycle, and incredibly frustrating to be constantly fobbed off and made to feel like a liar.
The final time I collapsed, I was taken in by ambulance and by pure chance there was a consultant working that day who knew about PH and recognised the symptoms straight away. Without a shadow of a doubt, if he hadn't been in A&E that day, I wouldn’t be here now and preparing to celebrate my 40th birthday. It felt like the end of the world to be told I had this disease at the age of 38.
I thought it would change everything, and it has, but my medication is helping, and I’ve learned not to put things off in life.
It’s frustrating because people look at me and see a healthy young woman, but they don’t see what’s going on inside. People just assume I’m lazy for not walking far, and they can be quite mean when they don’t understand what’s going on. But I’ve learned to accept that you can’t change things. You can’t always make people understand you, and that’s ok. You’ve just got to do what you can day-by-day.
I don’t stress about the small stuff anymore because it’s just not worth it, so if anything, having PH has given me a wake-up call that I needed.
It’s brought me and my family closer together, especially my mum and my sisters. I appreciate the time I spend with them and my nieces and nephews
so much more now, and I’m grateful for the little things in life, like being able to get up and walk to my front gate.
I used to worry about what people thought of me, or whether bills would get paid in time, but none of that matters now. I just try and do what I can each day and do my best to go to bed happy. The care I have received at my specialist centre, and the support from the PHA UK Facebook group, has helped me with this mindset.
I never thought I’d be sharing my story, especially on camera, in a million years. But if I can persuade one person to push harder for medical answers, or change one person’s attitude towards invisible disabilities, then it’s worth it.
share her story on camera
“Despite everything, Archie just gets on with things”
Archie O’Brian was diagnosed with PH at the age of five, and four years on, he still inspires his mum every day. Here, North Wales-based Sarah Williams shares their family’s challenges and celebrates the support that’s wrapped around them…
The truth is that Archie’s PH has changed everything for us as a family, but we do the best we can.
I have two other children, a 16-year-old and a three-year-old, and it’s hard to do things all together. My little girl, Raya, is always wanting to go to the park, but Archie can’t cope with walking and playing in that way, so I feel like I need to split myself in two. We spent the summer in our garden, because there’s nowhere else we could go.
Archie’s main symptoms are breathlessness and fatigue. He falls asleep in school sometimes, and he sits down while the other children enjoy playtime. He can’t really do much at all, compared to other children, and that’s hard to see.
But despite everything, Archie just gets on with things. He’s so inspiring, and such a character. He’s a comedian in his own little way.
His favourite thing is being at home, comfortable and cosy in his little hoodie blanket, on his iPad and eating a packet of Quavers. He loves going to the cinema
too, because there’s no walking involved.
The medications have really helped. He’s only on Sildenafil at the moment. Bosentan was added a while ago, but you need monthly blood tests with that drug and because Archie is autistic, he really struggled with them.
We’ve been told he might need to start using a nebuliser soon, and I’m not sure how he will cope with that, but knowing him, he will just get on with it. He copes really well with taking his tablets – he just pops them down and that’s it.
My other children are brilliant with Archie. My eldest, David, understands all of his needs, and although Raya does question why he can’t do things, she is starting to understand more.
My family and friends are a huge support to us, and although we’re not together anymore, Archie’s dad is very involved. His school is really good too, and the PH team at Great Ormond Street have been brilliant.
One of the hardest things about Archie having PH is that no-one has heard of it, and he doesn’t look like he’s ill. People don’t understand why he can’t do what other kids do, because he looks like there’s nothing wrong.
If he was in a wheelchair, it would be obvious, or if he was wearing an oxygen mask then people would ask questions. But all they see is a pale little boy who doesn’t go out much.
Helping people understand PH, and realise that not all disabilities are visible, is the main reason I chose to share Archie’s story for PH Day UK.
Even though it’s been five years since Archie was diagnosed with PH, I’m still taking everything in. But I put my trust in his medical team - because you’ve got to - and I’m grateful for all of the support around us.
“Self-care is really important when you have PH”
There’s a massive support network out there and
Cherise Brand was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) just a month after qualifying as a mental health nurse. The 28-year-old from Tyneside is now focusing on looking after herself, and losing weight for surgery that will give her a brighter future…
Ihad my first pulmonary embolism in 2022, and instead of getting better, my symptoms got worse – to the point that I couldn’t even bathe on my own.
A second clot was discovered, and PH was confirmed in October last year. At least I had an answer.
I have been told that a pulmonary endarterectomy [major surgery to clear the clots from the pulmonary arteries] is an option for me, but the only barrier at the moment is losing weight as I’m not able to have it until I’m lighter.
I’ve already managed to lose seven stones, and I’m working hard to lose more. If the surgery can give me a much longer, much more fulfilling life after surgery, then that’s what I’m working towards.
My CTEPH symptoms affect a lot of my life. I get very tired and breathless and as a mental health nurse I’m pretty much on my feet all of the time, so things are particularly hard when I’m at work.
My medication has helped, and losing weight has too. I just know that in the future, the weight loss will negate the symptoms. That feeling of breathlessness, and that flushness… I know that’s going to eventually come back.
Having such a serious health condition as a young person sometimes feels devaluating. A lot of people assume my breathlessness is down to my weight and they don’t understand what’s really going on when I’m huffing and puffing. They assume that because I’m young and overweight, I’ve done it to myself – but I’m just trying to get by doing the one thing
Scan to watch Cherise share her story on camera you can live a happy life
that most people find very easy to do, and that’s breathe.
I’m constantly worrying that I’m annoying people by breathing too loud or walking too slowly. I like to just try and crack on and say that I’m OK, but behind closed doors, some days I’m really hurting. I think there are probably a lot of people out there with this condition who have the same kind of thoughts, and that’s one of the reasons I shared my story for PH Day UK.
I also want the public to understand that PH is invisible and it’s not easy to live with. People need to have some compassion, and not be so quick to judge, as no-one really knows what others are going through.
My advice to someone recently diagnosed with PH is to obtain your information from the PHA UK (not Google!) and remember that it’s not the end. There’s a massive support network out there and you can live a happy life with PH. I also think self-care is really important when you have PH. If you need a day in bed, don’t feel bad about it. Your mind probably needs it as much as your body. My own self-care involves sitting and playing computer games, and if there are 100 dishes sitting there waiting to be washed, that’s fine – I don’t feel guilty, they can wait.
Cherise with her partner
There have been so many times when I’ve sat and cried about how my life is now, and I’m someone with a lot of insight into mental health and how to overcome challenges. There must be so many people who can’t see the light at the end of the tunnel.
I think there should be far more mental health support in PH and if I was in a better position, I’d go back to university and specialise in it. More importance should be placed on the emotional toll of the disease.
“I’m concentrating on having as much fun as possible these days”
Yes, it’s a rare condition, but I think we’re all keen to do what we can to raise awareness
With partner Jamie and daughter Olly
Nicki Ross lives in Aberdeenshire with PH and fibromyalgia, and despite the challenges, she’s determined to make as many memories as possible. These are her words.
Iwas officially diagnosed with pulmonary arterial hypertension in October 2022. I’ve had fibromyalgia (a chronic condition that causes pain all over the body) for many years, so I initially thought my symptoms were down to that. Things got so bad that I had to leave my job, and I was pretty much bed-bound for two years.
I had lots of referrals and lots of tests, but doctors couldn’t find anything wrong. My GP kept pushing for answers, and eventually I had tests that showed suspected PH. I was referred down to the Golden Jubilee National Hospital in Glasgow, where the diagnosis was confirmed.
At first it was a real learning curve trying to work out what was fibromyalgia pain, and what was PH pain, and trying to know which symptom was tied to which – because they’re two totally different diagnoses of completely different conditions. So, it’s been really quite difficult learning what’s what and knowing how to cope with it all.
It was initially thought that my PH was idiopathic, but after I volunteered as part
of a research study it was discovered that it’s down to a slightly mutated gene. I’m the first one in my family to have PH, so my 20-year-old daughter Olly is being tested soon.
I’m on three oral medications and I’m lucky that I’ve responded really well to them. I’m now able to fly, so my partner Jamie and I have just spent three weeks at Disneyworld in Florida.
I wore a badge while I was there that said ‘I’m celebrating my life’ – because we didn’t know if we would ever be able to go abroad on holiday, or even if I’d survive. Lots of people asked about the badge, so it was a chance to tell them about PH. Yes, it’s a rare condition, but I think we’re all keen to do what we can to raise awareness.
Because of the fibromyalgia, I’m still having mobility issues but I’m slowly getting there. I’m better than I was, but I still can’t walk long distances. I use a mobility scooter and a wheelchair when I need to, and we have installed wall bannisters and grab rails in our bungalow.
I’m concentrating on having as much fun as possible these days and making
Pictured on these pages: Nicki and Jamie are making lots of togethermemories
the most of everything. Jamie and I have plans to do lots more things together and make lots of memories.
Living with two invisible illnesses is challenging as because I look ok, people don’t really understand there is something severe going on in my body. I’m stable right now, I’m not deteriorating at the moment, but that will happen in the future. I’m just focusing on being able to enjoy things as we are just now, and I’m ever hopeful that there will be more treatments, or even a cure.
Most of my support comes from the team at my specialist hospital, the PHA UK Facebook group, and Jamie – who is now my full-time carer. I’ve always been independent, so accepting I had to ask him for help a lot was difficult to begin with. I felt like a burden at first, but I’m slowly getting out of that mindset. It can take a while, but you do get there.
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to watch Nicki share her story on camera
Over £1,100 was raised when friends Sammie and Alice joined forces to take on the Birmingham Tough Mudder event in September.
The girls tackled a brutal course of hills, obstacles, and, of course, a generous coating of mud. Alice’s mum lives with PH and they embraced the challenge to support our charity in her name.
We’ve been blown away by all your Here’sthroughoutefforts2024. a snapshot of just some of your support over the last couple of months.
A team of adventurous chums completed the 24-hour 3 Peaks Challenge in support of their friend Chrissie – coming in with half an hour to spare.
Nick Pericli, Barry Hawkins, Richard Stowey, Daniel Martin, Chris Knibbs, Richard Tovey and Gavin Stepney climbed the highest mountains of England, Scotland nd Wales, travelling between Ben Nevis, Scafell Pike and Snowdon.
The group climbed a total ascent of almost 10,000 feet and covered the distance of a marathon, with the added navigation of travelling between three mountains in three countries – all in less than a day!
Grace with her husband, the pantomine director
Supporter Jason Smith came up with a novel way of raising money over the summer, asking for donations in return for having wet sponges thrown at him.
Jason, who was fundraising in memory of his mum Lucinda, stuck his head and hands through stocks at his local fair, and invited crowds to have some fun. It was a sunny day, so at least the sponges would have been refreshing!
PHA UK member Grace Wallace combined her love of panto with fundraising, donating all the proceeds from her pantomime society’s latest performance to the PHA UK.
Sleeping Beauty was performed by adults and children from St Peter's Pantomime Society in Tyneside and directed by Grace’s husband. Over £700 was raised from ticket sales, refreshments, and a raffle, and Grace was able to help the group understand what it’s like to live with PH based on her own experiences.
“It’s going to be a true challenge of a lifetime for me”
Lindsey Greenwood is gearing up for something really special in 2025. After watching her partner’s uncle struggle with PH, she’s climbing Kilimanjaro in February to raise money for our charity in his memory, and to help others affected by the disease. Kilimanjaro is the highest mountain in Africa and the highest free-standing mountain above sea level in the world. Lindsey will be thinking of everyone impacted by pulmonary hypertension while she climbs.
“I’ve realised that so many people know so little about the condition”, she told us. “I would like to raise money for future generations and families to at least have more light shed on the subject, and hopefully one day have an understanding of it so lives can still have a resemblance of normality. This is going to be a true challenge of a lifetime for me.”
Good luck Lindsey!
Your kindness makes a difference. We are an independent charity with no government funding, so we rely on the kindness of our fundraisers to help us support people affected by pulmonary hypertension. From bake sales to bike rides, marathons to motor racing - and everything you’ve seen in this feature - we’re constantly amazed by the lengths our supporters go to in our name. We are so grateful for every penny raised! Find out more, get inspired, or request your free fundraising kit, by scanning the code.
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Being part of the PHA UK also enables you to participate in important research, and our friendly office staff are just one call away when you need advice. Join our PH family and you’ll be joining 4,500 members in a unique network of support and inspiration.
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Contact us here at Emphasis by emailing media@phauk.org or writing to Emphasis, PHA UK Resource Centre, Unit 1, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffield S35 2PH
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