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The Pulmonary Hypertension Association (PHA UK) is a national charity that provides support, understanding and information for people whose lives are touched by this rare and devastating lung disease. Registered charity no 1120756 www.phauk.org

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Did somebody say the ‘c’ word? If you’re organising your Christmas cards early this year, keep an eye on our website for a range of designs to suit all tastes. Spreading festive cheer helps support our charity too, with proceeds helping us to continue our work. If you’d like to know as soon as sales open, email office@phauk.org and we’ll keep you in the loop.

20/04/2018 11:09:16

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The Pulmonary Hypertension Association (PHA UK) is a national charity that provides support, understanding and information for people whose lives are touched by this rare and devastating lung disease. Registered charity no 1120756 www.phauk.org Member Lea Acres sent us this beautiful poem, reflecting on the loss of her son Will, in the hope that it may help others.

When you lose your child

Grief over rides Never subsides, When you lose your child. The feeling of despair And emptiness there, When you lose your child.

Time moves on and on You’re terrified that they are gone, When you lose your child.

You can’t move on Now they are gone, When you lose your child. You learn to smile on the outside But you’re numb on the inside, When you lose your child. Friends and families love they share Can’t always be there, When you lose your child. Blue skies and sunny days But you feel dark and grey, When you lose your child.

The lost years You’ll always yearn, When you lose your child. Hold memories close to your heart Trying not to fall apart, When you lose your child.

If you have experienced loss due to PH, you may find comfort in a new private Facebook group set up by PHA UK member Sally Parker and her daughter. It is a safe, supportive space to talk to others who understand. To join, type www.facebook.com/groups/215307796620821 into your web browser.

A special way to celebrate Asking for donations instead of gifts for special occasions is a wonderful, selfless way of supporting our charity - and it’s a great way to raise awareness of PH too. Member Dorothy Randall (pictured) asked for donations rather than presents for her 83rd birthday in June, raising an incredible £400 thanks to the generosity of family and friends. Supporters DJ and Sarah MacLennan did the same for their 25th wedding anniversary, raising a brilliant £205, and we know that lots of our wonderful community regularly set up birthday fundraisers via Facebook. We’re very grateful to you all. Read about more fabulous fundraising on p58

Can you spare five minutes?

Pulmonary hypertension can affect the lives of partners and family members too, but we know this important impact is often ignored. Researchers at Cardiff University have created a simple questionnaire to measure this impact, but they need your help to test it. They are asking for people with PH, and their partners / family members to spare five minutes to complete a survey at https://bit.ly/3rNG5qt Questionnaires must be completed by the end of September. The hope is for this Family Reported Outcome Measure (FROM-16) to be used routinely to better understand and care for the health and social needs of partners and families. We’ll keep you posted on developments. “I am so glad I pushed myself out of my comfort zone” Member Victoria Sant marked her birthday by abseiling 100 metres down the Spinnaker Tower in Portsmouth. She said: “Since being diagnosed with pulmonary hypertension, I have made sure I try and grab every opportunity. Every birthday means a lot to me because it's another year I get to be here, be with my family and friends, and experience different adventures. Even though I was terrified the whole way down the tower, I am so glad I pushed myself out of my comfort zone to try something new.”

A new look for our website We’ve had a makeover! Head to www.phauk.org to check out our new look website. We hope you’ll agree it’s now fresher and more modern, and importantly, that it’s easier for you find what you’re looking for. If you have any comments about the changes, please email office@phauk.org