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JOURNEY TO FULL HEALTH Rachel Kolisi and Khaya Dladla on recovering from COVID-19, and mindful lifestyle changes INSIDE:
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BURN AWARENESS I ORAL HEALTH I SKIN CARE I ORTHOTICS
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EDITORIAL COMMENT PUBLISHED BY
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INSTILLING GOOD health habits early
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s we enter winter, we ask our experts to share some much-needed advice around the treatment of burn injuries, how to strengthen our immunity to fight the dreaded flu, and weight management for children. According to registered dietician Minette Schoombie on page 11: “Globally, at least one in three children under the age of five is not growing well due to malnutrition, causing manifestations of stunting and wasting as well as obesity.” This reality isn’t helped by South Africa’s food security challenges, so we asked the experts to offer parents advice around what basic food our kids should be eating in the early years – because instilling good habits at the start is important. Another important habit to instill in your little one is good oral hygiene. Did you know that there is a relationship between posture and the muscles used during swallowing, chewing and speaking, which has lasting effects on facial growth and the position of the teeth. On page 15, Dr Reggie Reddy shares how oral health really does play a role in overall wellbeing. We also ask the medical experts to demystify the challenges around children with Down’s syndrome, and we look at innovations within prosthetics.
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COVER STORY Rachel Kolisi and Khaya Dladla talk through the challenges of contracting COVID-19 and the renewed lifestyle regimes they’ve adopted
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BURN AWARENESS Medical advice around how to protect against and treat burn injuries
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SKINCARE Anti-ageing treatment advice; why skin microbiomes matter; and treating eczema in children
11 A HEALTHIER YOU Strengthen your immunity; understanding childhood obesity; and what the experts say you should be feeding your toddlers 15
ORAL HEALTH What to do to set good oral hygiene practices in children
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DOWN’S SYNDROME Demystifying the challenges around children with Down’s syndrome
19 ORTHOTICS Innovations to enable greater mobility for amputees and unpacking the SAIS project HEALTHY TIMES l 1
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Rachel Kolisi
COVER STORY
Kolisi was public with her disappointments too. She revealed her struggle with her weight after COVID-19, and her embarrassment that her fitness journey was “stop/start”. “I reminded myself that it’s okay to get up and start again.” There were other realisations, too. “No positive results can come from a place other than that of self-love and embracing individuality – not comparing yourself to others.” The introspection has meant establishing other good habits like setting time for herself. “The more I say no and assert healthy boundaries, the easier it gets.” Nutrition also plays a part: “We eat healthily – our favourite is a good chicken schnitzel with mature cheddar and basil pesto served with roast veggies, wild rocket and baby tomato salad.” But they’ve made space for the occasional treat. “Sometimes, we’ll just order a burger!”
“I had to be patient with myself acknowledging where I needed help. That brought a sense of balance into my life.” – Rachel Kolisi
health and happiness
POST-COVID
Nia Magoulianiti-McGregor talks to two SA celebrities who overcame COVID-19 and used the experience to make mindful lifestyle changes
Images: Portrait images: supplied
RACHEL KOLISI
Rachel Kolisi, businesswoman, wife of Springbok rugby captain Siya Kolisi and mother to four children, thought she had a sinus infection last December – until she lost her sense of smell. After testing positive with COVID-19, she still had it relatively easy physically: “I never had a fever, no sore throat, no coughing.” The emotional toll was bigger. As she wrote on Instagram at the time: “It’s been so rough and scary at times, especially when you have small kids who don’t understand why they can’t touch you.” Liphelo, 13, and Keziah, 3, also tested positive – Liphelo with “adult symptoms” and Keziah with none at all, while Siya tested negative. “I’ve always been aware of the importance of the family’s health, but I saw COVID-19 as an opportunity to take extra measures. We took vitamin D, zinc, magnesium and general multivitamins to keep everyone’s energy levels up,” she says. It was a mindful journey back to full health. “I had to figure out a routine again: run a household, complete the day’s work, prioritise and set time aside to work out. “I had to be patient with myself acknowledging where I needed help. That brought a sense of balance into my life. It also gave me the freedom to show up and engage fully in every capacity.”
KHAYA DLADLA
Last year, TV actor and radio broadcaster Khaya Dladla felt completely well until after an obligatory test when a Gagasi FM colleague was diagnosed with COVID-19. “I tested positive and all of a sudden I couldn’t breathe properly. My brain started doing weird things. I realised I was panicking. “’Stop! You’re fine,’ I told myself.” From then on, Dladla displayed no symptoms. But having to quarantine for two weeks meant he had time on his hands. “I started working out, following Billy Juice on YouTube and subscribing to the Team Body Project for home workouts. My exercise routine had been random before COVID-19.” He also consulted a health practitioner on the blood type diet. “As a type A, I was advised to give up meat and slow down on dairy.” Before contracting the virus, Dladla sometimes forgot to eat because he was always on the hop. But then he started preplanning meals and initiated “smoothie days”. “I’d throw in spinach with some butternut. Or I’d steam broccoli and snack on my favourite power food, avo.” He learned where to source lactose-free cheese and chose organic food. Dladla started taking zinc and vitamin B. “I used to feel chronically fatigued before. No longer. It was the start of a beautiful journey.” There was also an emotional and psychological journey in motion. “We kept on hearing how people had died. There would be a funeral I couldn’t attend, making it difficult to get closure. Also, I had to reimagine my career and started using social media as a business. I felt, through it all, that I was becoming mentally strong.” Dladla’s fiancé Mercutio Buthelezi stayed at his side – though he never caught the virus. Dlala adds that quarantine allowed him to really reflect on his life journey. “I needed to pause. I pressed the reset button. Quarantine was a journey of introspection, new habits and the return of a few old ones. I learnt how to control my thoughts and harness the power of the mind. “Today I speak life to myself – every day.”
“Quarantine was a journey of introspection, new habits and the return of a few old ones.” – Khaya Dladla Khaya Dladla
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BURN AWARENESS
A burning
ISSUE
During winter, the number of burn patients is at its highest, say health experts. Levi Letsoko finds out why
MULTIDISCIPLINARY APPROACH NEEDED
Dr Yashica Khalawan, a specialist in skin treatments and aesthetic medicine, says deploying a multidisciplinary team of healthcare professionals can improve response measures to burn cases even when resources are highly constrained. “Access to resources and the improvement Dr Yashica Khalawan of infrastructure can be challenging. The development of dedicated burn services refines the process of care without the need for increased resources,”says Khalawan. Equally important to treating the physical wounds is the need to attend to the psychological impact of such injuries. Khalawan is impressed with the survival rate of burn victims, but she emphasises the need to address their emotional wounds. “A psychologist is an important member of the multidisciplinary team and can assist patients in adjusting to their hospitalisation. Long-term rehabilitation includes dealing with loss, grief, acceptance of body image and self-image,” she says. “Psychologists also address conditions such as delirium, acute stress disorder, anxiety, depression, post-traumatic stress disorder and other psychiatric disorders that could result from the incident,” Khalawan adds.
Lessing lauds the work done by organisations such as the Hero Burn Foundation, Skin Donation, Medika SA and various other nonprofit organisations in raising awareness around safety. “I believe that every household should be encouraged to have a burn kit. Accidents happen fast. Education is vital,” she concludes.
BURN INJURIES – THE WHY, HOW AND WHAT WHY and HOW do burn injuries occur? There are many reasons why and how burn injuries happen, especially during winter, says Sister Renè Lessing, clinical director at Haute Care. • People suffering from diabetes experience loss of feeling in their feet and often can’t gauge the heat generated by hot water bottles, heaters and even bath water. This can result in burn wounds on the feet. • Small children pulling kettle cords while the water is boiling or grabbing hot cups from a countertop frequently results in boiling or very hot water poured over them. • In informal settlements, residents often light fires because they have no access to electricity. Fires can turn into a blaze quickly resulting in burn injuries. • Other causes of burns result from occupation-related incidents in workplaces such as factories that use flammable chemicals or restaurants that use hot oil. What you must NEVER do: There are so many myths about how to treat burns, but the truth is that many of those can cause further damage. Never apply ice, butter, toothpaste, ice water or egg white. These can introduce even more bacteria or even increase the damage already done. What you SHOULD do: • Rinse the wound with running cool tap water (or use cool clean water from a container) for at least 20 minutes. This will cool down the wound and assist with the pain. • Then lightly cover the wound with either an emergency-type dressing or a petroleum jelly gauze dressing. • The important rule is to keep it clean and minimise pain. Remember that a burn patient needs medical help, so it is advisable to seek professional medical assistance as soon as possible.
Images: iStock.com, Portrait images: supplied
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ealth systems around the country are bracing for a spike in accidental burn cases. Sister Renè Lessing, clinical director at Haute Care, notes that reported burn injuries escalate around winter every year and a disturbing number involves children. Public hospitals are usually the first point of treatment for most patients. Most lower-income communities do not have medical insurance, so they rely primarily on the public health system. Requests for assistance at public hospitals are higher because of their broader mandate of serving their local communities. “All health systems are doing the best they can with what they have, given the unprecedented circumstances that the pandemic has placed not only on our country, but also globally,” says Lessing. “We have excellent public burns units, but there will never be enough. A consistent approach across all levels of healthcare providers, the optimisation of initial care and the facilitation of appropriate Sister Renè Lessing referrals remains a challenge,” she adds.
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SKIN Save your
SKIN CARE
Constant hand sanitising and mask wearing plays havoc with your skin, our expert explains how to keep yours healthy
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our skin is the first line of defence against organisms that cause disease. It is home to a microbiome made up of naturally occurring bacteria and fungi, says Dr Hetesh Pitamber, a dermatologist practising at Netcare Sunninghill Hospital. “These play an important part in supporting skin health and maintaining this barrier, but unfortunately with the daily use of masks and hand sanitisers, this is constantly being disturbed. As a result, conditions such as contact dermatitis and eczema of the hands are becoming common as is ‘maskne’, or perioral dermatitis, which presents with little red bumps and peeling around the mouth. While wearing masks and practising regular hand hygiene are essential these days, this shouldn’t be at the cost of your skin health,” says Pitamber. He offers some tips to help protect your skin. Hands: • Wash your hands thoroughly with sufficient soap and clean running water for 20 seconds – this remains the gold standard for hand hygiene. It’s also gentler on your skin than sanitisers. • Always use a sanitiser with at least 60 per cent alcohol concentration – anything less will not be effective – and rub all over your hands and wrists for 20 seconds. While hand sanitisers of the right composition
can effectively kill most harmful pathogens, there are certain ones they don’t kill, such as Clostridium difficile and norovirus, so using soap and water is preferable. • Moisturise your hands before and after using sanitiser. Constant sanitising can disrupt your skin’s barrier making you more prone to eczema, contact dermatitis and infections. • Wear nonlatex powder-free gloves when you go out if you’re struggling with a skin condition on your hands, and apply sanitiser over the gloves. The gloves will protect and allow the skin barrier to repair. Face: • Wear a mask that’s breathable and fits comfortably. Constant friction against the skin can cause conditions such as frictional acne and perioral dermatitis. A soft cotton mask is a good choice – avoid nylon. Reusable masks must be washed daily. • Help your skin to breathe by only using light make-up such as noncomedogenic – or breathable – powders, or water-based solutions. If you are struggling with any form of skin irritation, Pitamber advises consulting your GP or dermatologist for proper diagnosis and treatment, so that your skin can recover and the discomfort alleviated.
TREATING childhood eczema
While there’s no known cure for childhood eczema, here’s some expert advice on how to manage the condition.
Image: iStock.com
Eczema, also known as atopic dermatitis (AD), is a predominantly genetic condition with environmental aggravation, explains Professor Carol Hlela, head of Paediatric Dermatology at Red Cross Children’s Hospital/University of Cape Town. “Unfortunately, there’s currently no cure for it, so the only way to treat your child’s eczema is to keep it under control.” She offers the following guidelines. Do: • Moisturise. The two main components of eczema are dry skin and inflammation. Moisturising is the basis of eczema treatment as well as prevention. If you moisturise the skin and help prepare the skin barrier, you reduce skin infection. Hlela advises applying a moisturiser within three minutes after showering or bathing and reapply it four to five times daily. • Use a steroid ointment. This is the most effective treatment when prescribed correctly. Anti-inflammatory creams (topical cortisone or topical steroids) can also be used for the relief of itchy symptoms, as well as inflammation. • Choose cotton. Knitwear and synthetic fibres can contribute to your child’s eczema flare-up. Cotton is the answer as it absorbs sweat, which can irritate the condition. • Find a specialist. This is crucial to finding the right course of treatment. Early treatment is vital for effective management, and because it needs to be individualised, a medical specialist should always be consulted.
Don’t: • Use products that irritate. These can be difficult to identify and is mostly trial and error. The rule of thumb for washing and moisturising products is “no fragrance and no colour”. Remember that just because a product claims to be organic or natural doesn’t imply that it’s good for eczema skin. Some can irritate or cause an allergic reaction, so opt for a mild soap with a neutral or low pH. • Bath for more than 10 minutes. While cleanliness and sanitation are essential for effective management, always stick to short baths. Long baths can weaken the skin barrier and completely dry out the skin’s moisture while sweat can irritate the skin even more. • Attempt the food elimination diet on your own. Studies show that only about 30 per cent of eczema patients have some form of food allergy. Instead of going it alone, always seek professional advice from a specialist GP, paediatrician or dermatologist about the relationship between certain foods and your child’s eczema. Only they are qualified to decide whether to do the appropriate tests to confirm or deny this.
SOURCES • Dr Hetesh Pitamber: 011 806 1883/011 257 2107, Netcare Sunninghill Hospital, www.netcarehospitals.co.za/Hospital/ Netcare-Sunninghill-Hospital • Professor Carol Hlela: ingresshealthcare.co.za/; 021 045 1554 HEALTHY TIMES l 9
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REV UP YOUR
A HEALTHIER YOU
immune system
With COVID-19 still very much present and the winter flu season on our doorstep, we need to stregthen our immunity to stay healthy, writes Lynne Gidish
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ight now, says Giulia Criscuolo, a registered pharmacist and complementary health practitioner, we’re all pretty much sitting ducks for infections this winter. “Our level 5 lockdown last year meant that colds and flu were almost nonexistent,” she explains. “But being out so Giulia Criscuolo often these days could result in us becoming sick.” This, says Criscuolo, is because most of us are dealing with depleted immune systems due to the ongoing emotional and physical stress that’s become part of our daily lives. However, there’s plenty we can do to fight infection.
GIVE YOUR BODY A SUPPLEMENTARY BOOST
Here’s Criscuolo’s favourite choices for supplementation. • Vitamin D can reduce incidences of colds and flu by 50 per cent – low levels of vitamin D have also been associated with a higher rise of COVID-19 hospitalisation. • Vitamin C – preferably liposomal (fat-soluble) – boosts your immune cells, helps to increase the production of antibodies and may shorten the duration of a cold. • Selenium may improve your immune response to viral infections. • Zinc may help shorten the duration of colds and flu by up to 40 per cent. • Probiotics – a healthy gut equals a healthy immune system. • Omega-3 fatty acids are anti-inflammatory. They help boost your immune system and have been shown to help lower the risk of COVID-19 by 12 per cent. • Curcumin is a powerful anti-inflammatory and antioxidant and helps to support a strong immune system. All of these can be taken safely by the whole family, says Criscuolo, who recommends always discussing any form of supplementation with your health practitioner or pharmacist.
Most of us are dealing with depleted immune systems due to the ongoing emotional and physical stress that’s become part of our daily lives.
REVIEW YOUR LIFESTYLE
“Remember that supplementation is just one aspect of what you can do to support your immune system,” says registered pharmacist and complementary health practitioner Giulia Criscuolo. “Lifestyle is vital too; making healthy choices will go a long way in assisting your body to function optimally.” These include: • eating plenty of fruit and vegetables, whole grains, nuts, seeds and good quality protein – never before has “you are what you eat” been more important • exercising regularly • getting enough sleep • spending time in nature • meditating regularly • getting some morning sunshine • doing more of what you love to do – whatever fills you up inside • taking long, deep, calming breaths – anywhere, anytime • being discerning about what you listen to, watch and read • connecting meaningfully with others.
THE BIG PICTURE
The number of overweight and obese children is increasing around the world. Our expert weighs in on why this is happening Malnutrition is a condition caused by eating a diet that lacks a healthy amount of one or more of the important nutrients needed for your body to function optimally, says registered dietician Minette Schoombie. “Globally, at least one in three children under the age of five is not growing well due to malnutrition, causing manifestations of stunting and wasting as well as obesity.”
THE CAUSES
According to Schoombie, childhood obesity is a complex chronic disease that has multiple causes. “There are several factors linked to this,” she says. “The environments that children grow up in these days make it much easier for childhood obesity to occur. Children are often exposed to high-sugar, high-fat, high-salt and energy-dense foods that lack micronutrients. While these foods tend to be much cheaper, they are also much lower in nutrient quality, resulting in vitamin and mineral deficiencies.
Minette Schoombie
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A HEALTHIER YOU
STROKE
“Overeating these energy-dense foods combined with a lack of physical activity not only puts children at risk for obesity, but also for the double burden of malnutrition that occurs in obese children. Early influences and even intergenerational factors can also increase the risk for being overweight and obese,” she continues. “Parental overweight and obesity is a risk factor for childhood obesity because family influences that encourage micronutrient-lacking energy-dense diets can result in children gaining unnecessary weight. Cultural background is another contributor: for example, in certain South African communities, there’s a strong tendency towards larger body sizes being seen as more acceptable, particularly for women.”
THE HEALTH RISKS
WHAT TO EAT IN THE EARLY YEARS
What your baby eats in the early years significantly impacts their development. Here’s how to ensure that their nutritional requirements are met
Initially, babies only need milk (breast or formula) to thrive and survive, says registered dietician Rosanne Lombard. “As they get older, milk on its own no longer meets their nutritional needs, and to grow and develop optimally and reach their developmental milestones, they require additional protein, vitamin A, vitamin D, iron and zinc.”
THE SOLID FACTS
There’s often confusion about when to start introducing additional nutrition, says Lombard. “The World Health Organization has a standardised recommendation of introducing solids at around six months, while the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHN) suggests anytime between 17 and 26 weeks. However, every child is different so take note of possible cues that your baby is ready. These include: • opening their mouth when a spoon comes towards them • being able to sit without support • being able to hold their head steady while sitting Rosanne Lombard • trying to grab food to put in their mouth.
“The ideal diet for babies and children includes all the food groups.” – Rosanne Lombard
“Parental overweight and obesity is a risk factor for childhood obesity because family influences that encourage micronutrient-lacking energy-dense diets can result in children gaining unnecessary weight.” – Minette Schoombie
WHAT’S THE BEST DIET?
The ideal diet for babies and children includes all the food groups – carbohydrates, proteins and fats, says Lombard. • Carbohydrates: oats, potato, sweet potato, brown rice, fruit (mashed banana, pawpaw, mango) and vegetables (carrots, broccoli, gem squash, pumpkin). • Proteins: Legumes (baked beans, chickpeas, lentils), fish (hake, pilchards, salmon, tuna), chicken, red meat, eggs and dairy (full cream yoghurt, cream cheese and cow’s milk – only after 12 months). • Fats: avocado, olive oil, various nut butters.
WHAT TO AVOID
Anything that adults should be limiting, should also be limited for children, advises Lombard. The following examples of foods should be limited or avoided in the early years. • Sugar: foods that contain sugar (pastries, cake, chocolates), drinks that contain sugar (cold drinks, fizzy drinks, fruit juices). Try to avoid adding sugar to food. • Salt: processed meats because they tend to contain a lot of extra salt. Avoid adding salt to the food you make. • Hard food: olives, popcorn, grapes, whole nuts. • Cow’s milk: only after 12 months – milk alternatives like almond milk are far better. The aim is to ensure that you’re giving your child the best nutritional start possible,” says Lombard. “So your goal is to expose them to all the important nutrients. The greater the variety of food you offer your child, the better!”
SOURCE • Giulia Criscuolo: www.coyneheathcare.com; email: g@spiralconnect.za.net • Minette Schoombie and Rosanne Lombard: www.nutritionalsolutions.co.za; email: admin@nutritionalsolutions.co.za
Images: iStock.com, Portrait images: supplied
Obesity in children has serious health implications, says Schoombie. Children who suffer from obesity have a higher likelihood of developing: • adult obesity • heart disease • type 2 diabetes • asthma • allergies • sleep apnoea • stigmatisation and depression. “The first 1 000 days in a child’s life is crucial,” says Schoombie. “What your child eats and doesn’t eat during this time sets the scene for long-term nutritional implications. Ensuring adequate nutrition in the first few years can help them enjoy a long healthy life, which is why investing in nutrition is one of the best gifts to give your child.”
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ORAL HYGIENE
Caring for your
CHILD’S TEETH
What can parents do to entrench good oral hygiene habits in their children? Simple, set a good example, writes Nia Magoulianiti-McGregor
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orld Health Organization statistics show that worldwide over 530 million children suffer from dental caries. “So,” says Tanya Prentzler Cape Town-based dental hygienist, “it’s important to encourage good dental behaviour. And the best way is to set a good example by maintaining a routine yourself. “Children need routine and consistency in dental care,” she says. “Pick a time that suits them to brush for two minutes twice a day. It doesn’t have to be after supper, though they should rinse with water before bed.” Prentzler says a diet high in acidic foods or drinks such as lemons and fruit juices will result in tooth decay. “Rinsing with water after sugary or acidic foods helps.” She advises limiting sweets to mealtimes, diluting juices and resisting adding refined sugar to the bottles of toddlers.
NO PLACE FOR PLAQUE
“Plaque consists of bacteria that produce acid as a byproduct of metabolising the carbohydrates and sugars in your mouth. The acid will ‘dissolve’ the enamel of teeth by taking minerals from that enamel.” Plaque can also cause gingivitis – inflammation of the gums – where they become red, swollen, and bleed easily. “This can usually be reversed with daily brushing and flossing, and regular cleaning by a dental professional,” Prentzler says. “Flossing should begin as soon as the teeth start to have close contact with each other. When kids can tie their shoelaces, they can usually brush and floss their teeth on their own.” Strengthen enamel with fluoride toothpaste, advises Prentzler, but use only a “pea-sized” amount. “Supervise younger children so they swallow as little as possible.”
EMPOWER THEM
Images: iStock.com, Portrait image: supplied
Kids need to take ownership of their oral health, so let them choose their toothbrush and pick their toothpaste, she says. And be positive about their visits to the dentist. “Don’t pre-empt fears. “And, use a small toothbrush. ‛Elephant-sized’ brushes are not useful,” Prentzler says. “You can’t clean your teeth with a broom!” She adds that parents should not underestimate the importance of cleaning baby teeth. “These are important for speech development, space maintenance and jaw development.”
“Flossing should begin as soon as the teeth start to have close contact with each other. When kids can tie their shoelaces, they can usually brush and floss their teeth on their own.” – Tanya Prentzler
HOLISTIC DENTISTRY MAKING HEADWAY
There’s a saying, “you don’t have to brush all your teeth, just the ones you want to keep”. Holistic dentistry takes this a step further. By Nia Magoulianiti-McGregor Dr Reggie Reddy is a holistic dentist with a string of postgrad courses in oral medicine and periodontics behind him. When consulted, he’ll take a detailed medical history, look out for an “acidic” state (“alkaline is the healthy state,” says Reddy) and “identify mouthbreathers” (this, he says, can dry out the mouth, eventually causing gum disease and tooth decay). Dr Reggie Reddy A basic tenet of holistic dentistry, says Reddy, is that there is a relationship between posture and the muscles used during swallowing, chewing and speaking, which has lasting effects on facial growth and the position of the teeth. “There’s also a very intricate inter-relationship between the teeth, the mouth and the body, which needs to be respected. Dental markers like compromised bone and gum tissue can indicate an immune-compromised system and may even bear some relation to the cardiovascular system. The texture of inter-oral tissue – if it’s not uniform or is yellowish – could be a sign that cholesterol levels are high.” Holistic dentistry involves metal-free dentistry, says Reddy. “We use nontoxic restorative materials. Our practice is 100 per cent amalgam-free.” Root canal treatments are a last resort: “We use biodentine, a material that the allows for regeneration of the tooth’s natural dentine layer, thereby preventing invasive root canal treatments if possible.” Remedies tend to be natural unless there is a specific need for an allopathic antibiotic. “I use Septogard as a natural antibiotic, olive leaf extract for an active infection, arnica for inflammation and tea tree oil, which reduces bacterial count for biomechanical irrigation or a mouthwash.” Fluoride is a no-no in his books. Sophisticated, cutting-edge dental laser treatment, piezoelectric scalers, myobrace braces (no metal braces), and even Botox to reduce a “gummy smile” is available. “Oral health plays a vital role in your overall wellbeing. We try to be as noninvasive as possible and create a climate for the body to heal itself.”
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Misconception
vs REALITY
There are many misconceptions surrounding Down’s syndrome. Our experts unpack the myths and share how parents can prepare for and benefit from a child with Down’s syndrome. By Kim Maxwell
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or many expecting parents, the realisation that their baby has Down’s syndrome (or Down syndrome) can bring a whirlwind of questions and fluctuating emotions. As with any new journey, the best approach is to be armed with information and know that resources and skilled people are at hand. Mary Klinkradt is CEO of Raising Hope South Africa in Cape Town, a nonprofit that works with individuals and families impacted by disabilities. As a parent coach, she also offers private specialist support. Klinkradt’s three children gave her first-hand experience in navigating the challenges brought about by Down’s syndrome (DS). “My second child was diagnosed with DS shortly after birth, and later on with autism and epilepsy. He has not let this stop him doing the things he likes,” she says. Now 16, Klinkradt’s son enjoys cycling in his buggy with his race partner, participating in adaptive surfing sessions and reading books (his family assists here) about space, nature and the planet. Klinkradt says learning the appropriate terms makes a difference. “Down’s syndrome always has a capital D and a small s,” she explains. “It is not acceptable to refer to a child as ‘John is Down’s syndrome’ or ‘the Down’s child’. We prefer ‘John is a child with Down’s syndrome’.” Similarly, Klinkradt says the labels “mentally retarded” or “mentally deficient” are unacceptable. It’s preferable to say babies or children with DS have an Mary Klinkradt “intellectual disability”.
“You’ll have this window of opportunity to teach others about DS and how it impacts your child and your family, enabling them to understand, accept and support you and your child.” – Mary Klinkradt
MEDICALLY SPEAKING
“DS is one of the most common genetic birth defects, affecting about 1 in 700 babies. There are three possible genetic causes,” says Dr Birgit Schlegel, a subspecialist in paediatric neurology at Mediclinic Constantiaberg. “Most often, DS is caused by an extra chromosome 21 in all cells of the affected child, known as Trisomy 21.” Mosaic Trisomy 21 and Translocation Trisomy 21 are less common genetic causes. Schlegel says that the overexpression of chromosome 21 results in a decrease in the number of neurones in the central nervous system. This causes dysregulation of some normal cell processes, resulting in neurotransmission abnormalities. In a child, this results in impairments in cognitive Dr Birgit Schlegel domains, affecting concentration, communication, memory and task performance. Children with DS can also have delayed motor development due to low muscle tone, lax ligaments, poor balance and postural control difficulties. On the plus side, as DS is such a common genetic disorder, so much is known about the condition, including how to screen for possible associated complications and the relevant tests available to safeguard the baby’s wellbeing. “A child with DS is, first and foremost, a precious, long-awaited baby and a unique individual. They will have all the typical needs of a newborn and behave like most babies,” says Schlegel. “A baby with DS will grow and develop, and achieve most typical milestones, but in their own time. It’s important not to compare them to neurotypical peers, but to learn early to celebrate their individual progress and successes.” Yet new parents tend to do just that. So how should they prepare mentally for a baby with DS? Klinkradt says grieving the loss of their expectation is important. “It’s normal to feel like something has been taken away from you, that you’ve been cheated of the perfect family. You might discover expectations that you weren’t aware of, which suddenly seem unlikely … they might not be able to drive a car one day or move out of home. “This may take time, and will sometimes knock you sideways. For example, when you see a baby the same age as your child walking while yours is still trying to sit up,” she explains.
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DOWN’S SYNDROME
LIFE-CHANGING
“Having a baby with DS changes your whole life. Suddenly there’s so much more to consider in every situation,” admits Klinkradt. “While they are tiny, this isn’t as noticeable, but between six months to three years, when others are going from fully dependent to starting to explore the world independently, the gap between your baby or toddler and their peers can seem big and overwhelming.” When raising a child with disabilities, parental guilt comes from many directions, Klinkradt says. It could be guilt that you may have caused your child’s disabilities, or about not affording the treatment you think they need. It could be about taking time out for yourself or for spending insufficient time working at therapies. Her advice is to assess your network, be kind to yourself and don’t be afraid to ask family and friends for help. Fielding questions – and unwanted but well-intended advice – is another area parents have to navigate. “You may be questioned by well-meaning family and even strangers about why you’re doing things for your little one that they feel she should be able to do by herself,” says Klinkradt. “You’ll have this window of opportunity to teach others about DS and how it impacts your child and your family, enabling them to understand, accept and support you and your child.” Siblings get asked questions by friends too, so sharing knowledge at an age-appropriate level helps them to answer simply about why their sister with DS is different, says Klinkradt.
“A baby with DS will grow and develop, and achieve most typical milestones, but in their own time. It’s important not to compare them to neurotypical peers, but to learn early to celebrate their individual progress and successes.” – Dr Birgit Schlegel
Images: iStock.com, Portrait image: supplied
INTERVENTIONS
Schlegel says early intervention programmes – including physiotherapy, speech therapy and occupational therapy – can support a child with DS in achieving many milestones typical of children at a young age. “They will be able to walk, talk, dress and feed themselves and be toilet-trained, but often do so at a later age than other children.” “Babies with DS tend to look at people’s faces more than at objects,” says Professor Alta Kritzinger, a speech-language therapist and Professor Emeritus in Pretoria. Recent research shows that, unlike neurotypical babies, those with DS don’t easily master the triadic gaze (shifting eye focus back and forth from their mother to an object). Babies with DS need help in looking at surrounding objects, she says. “As they tend to look at your face, it’s important to keep the object – for example, a mobile – nearer your face. This helps them extend their gaze to objects and activities around them.” Schlegel says learning ability varies widely in children with DS, so many will learn to read, write and learn functionally. They should also participate in childhood activities and their communities. DS will not become the defining aspect of the child. “A child with DS is a special little human being with their own personality traits,” she concludes. “Children with special needs, especially DS, can bring something invaluable to their families, such as a deeper understanding of humanity and a capacity for great joy Prof Alta Kritzinger and caring.”
guIDelINe to DeVelopmeNt SeQueNceS
Children with DS usually go through typical development sequences, but in their own time, says Dr Birgit Schlegel, a subspecialist in paediatric neurology. This table is only a guideline: RANge foR DowN’S SyNDRome
RANge foR NeuRotypIcAl cHIlDReN
6–30 months (11 months average)
5–9 months (6 months average)
8–22 months (6–12 months average)
7 months (9 months average)
Stand alone
1–3 years
8–17 months
walks alone
1–4 years (average 26 months)
9–18 months (average 13 months)
1–4 years (average 18 months)
1–3 years (average 10 months)
2–7.5 years
15–32 months
Responsive smile
1.5–5months
1–3 months
finger feeding
10–24 months
7–14 months
Drinks unassisted
12–32 months
9–17 months
uses spoon
13–39 months
12–20 months
Bowel control
2–7 years
16–42 months
Dresses self, unassisted
3.5–8.5 years
3.25–5 years
MILESTONE gRoSS motoR Sits alone crawls
lANguAge first words two-word phrases SocIAl/Self-Help
Source: National Down Syndrome Society
PROFESSIONAL ASSOCIATIONS PROVIDING INFORMATION AND SUPPORT:
• Down Syndrome South Africa: downsyndrome.org.za • Raising Hope SA: www.raisinghopesa.com • National Association for Down Syndrome: www.nads.org • National Down Syndrome Society: www.ndss.org • Down Syndrome International: ds-int.org
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ORTHOTICS
FREEDOM to move
Being mobile is essential for good quality of life. Caryn Gootkin talks to the experts about the innovations within this sector
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rosthetics manufacturers are always looking for ways to improve communication between the body and external prostheses to enable amputees to move as naturally as possible. “Sensors on muscles read signals and give input to the prosthesis to tell it to move in some preprogrammed way,” says Jan Kristensen, academy director of Össur, which develops and manufactures noninvasive orthopaedic equipment. “We always look for ways to give amputees more ‘ranges of freedom’ to allow them to perform more movements. Hand prostheses, for example, now have six motors, one in each finger and two in the thumb, giving users more ranges of freedom.”
PATTERN RECOGNITION
Pattern recognition, the holy grail of prosthetics, occurs when the prosthesis learns to interpret individual muscle movement patterns and assigns specific movements to that pattern. “Pattern recognition involves using more electrodes (or sensors), for example, in the arm, to pick up more signals and signals of different strengths,” says Jan Kristensen. “Through software, we can allocate a certain pattern of muscle signals to the movement the amputee is trying to make with their finger, wrist or elbow. The prosthetist asks their patient to give signals for each type of movement. The software connects to the prosthesis via Bluetooth and in this way, they allocate signals to movements. The user must then replicate these muscle patterns within certain parameters.” Prosthetic knees learn gait patterns and adapt to them, constantly changing speed to match the amputee’s walking speed. “Prosthetic knees have both load and gyro sensors that can adjust a thousand times each second,” says Kristensen. “Össur’s Jan Kristensen bionic knees use pattern recognition via artificial intelligence to recognise how each individual’s body moves. The knee needs to recognise when the walker changes pace or starts walking up or down stairs – walking up stairs demands a different movement to walking straight or down stairs, so the prosthesis needs to know when to extend
the knee because we are walking straight, and when not to extend fully because we are walking up stairs. Algorithms in the knee work with pattern recognition, sending an order back to the harmonic drive in the knee.” Picking up muscle patterns and acting accordingly is far more complex with arm prostheses than for lower limbs. “Our hands perform so many more tasks than our legs; we use a wide range of grips, so the permutations are vast,” says Kristensen. “On top of this, arm prostheses are much smaller than leg prostheses, so we have less space to work with.” The next step is for pattern recognition to happen through implantable myoelectrical sensors, each one the size of a grain of rice. “These are implanted into the muscles, pick up their signals and transfer them wirelessly to the computer in the prosthesis, providing clearer, more reliable signals,” says Kristensen. “In the future, we will see sensory feedback going the other way too, with artificial limbs being able to sense cold and warm, hard and soft.”
“Through software, we can allocate a certain pattern of muscle signals to the movement the amputee is trying to make with their finger, wrist or elbow.” – Jan Kristensen
DID YOU KNOW?
Most prosthetics are constructed with lightweight carbon fibre, aluminium and titanium components. The average prosthetic lasts three to five years. All prosthetics are custom-made to each individual patient, taking several factors into consideration, such as health, lifestyle, age and weight.
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ORTHOTICS
STROKE
Prehabilitation and stump shaping takes about six weeks. During this time, the occupational therapist liaises with employers and family and helps to modify the amputee’s work and home environment. Once the prosthesis is ready, the prosthetist and physiotherapist teach the amputee how to function with the new limb. “This is an ongoing process of adjustment as the stump settles down,” says Chin. “The physiotherapist works with the amputee on balance, walking efficiency, and general body awareness andability. Together they explore how the amputee can return to sport or exercise and in what form.” The process for upper limb amputees is similar, although it includes dominance retraining in amputees who have lost their dominant hand. “They learn to write, fasten their pants, do up buttons, fasten shoelaces – all things we take for granted. They are also shown various assistive devices that enable independence, for example, plates with spikes to hold food steady so that the amputee can use their good hand for slicing.”
What amputees NEED TO KNOW
Amputations, whether elective (planned, for example, due to vascular insufficiencies caused by diabetes) or as a result of an accident, are always traumatic for the individual. Here’s how to prepare. “Before an elective amputation, the amputee should meet the prosthetic rehabilitation team to plan a roadmap of the process,” says Jayson Chin, orthotist/prosthetist at Chin and Jayson Chin Partners. “This reassures them that they will be able to return to their life, but with certain limitations. It helps to go into surgery knowing the plan. With emergency amputations, the amputee usually receives this information after surgery.” Having a professional support team is critical to the process. “Our teams consist of a prosthetist, a physiotherapist, an occupational therapist, a psychologist or counsellor and a doctor, with a wound care nurse and a nutritionist called in when necessary,” says Chin. “The psychologist plays an important role in debriefing the process with the patient. Losing a limb triggers a grieving process, and the psychologist works with the amputee through denial, anger, helplessness, and towards acceptance. They also work with the family, who often find it difficult to adjust.” After surgery, the amputee undergoes stump shaping. “It takes about two weeks for the surgical site to heal, after which we begin shaping the stump into a conical shape to fit into the hard socket of the prosthesis,” says Chin. “At this time, the physiotherapist starts bed exercises to strengthen muscles and instructs the patient on stump positioning to prevent a flexion contraction.”
“The physiotherapist works with the amputee on balance, walking efficiency, and general body awareness and ability. Together they explore how the amputee can return to sport or exercise and in what form.” – Jayson Chin
Bloemfontein Central University’s Centre for Rapid Prototyping and Manufacturing (CRPM) is a key player in the advancement of additive manufacturing (AM) (also known as rapid prototyping (RP) or 3D printing). “CRPM operates under Prototypes representing the patient’s skeleton, with wax-up used for ISO 13485 certification demonstration and planning purposes, (certified by TÜV SÜD, and also to virtually explain the fitment of the implants to surgeons in Botswana. Germany) to produce a range of medical products or devices, from surgery planning models and cutting and drilling guides to patient-specific (custom-designed) implants, mostly in titanium,” says Professor Deon de Beer, chair: Innovation and Commercialisation of AM at CRPM. “As human bodies are unique, each patient requires a unique product.” Building on over 21 years of experience, CRPM, the University of Botswana and the Botswana Institute for Technology Research and Innovation bid successfully to the Southern African Innovation Support Programme (SAIS2), funded from Finland and managed from Namibia (Windhoek). “The SAIS project was to develop AM ecosystems in Botswana, so as to transfer knowledge to neighbouring countries, help expand the use of AM, support people in need, and build new industries,” says De Beer. “We used medical application as the core focus to create a knowledge base that can be used in other applications.” The project progressed well until the COVID-19 pandemic shut down travel between SA and Botswana. “All project-related activities continued virtually, which worked because a significant part of the design and AM process is software-based,” says De Beer. “The process starts with CT or MRI scans to identify the patient-specific needs that drive the computer aided design (CAD) process, the manufactured solution, and surgery guides to achieve optimal surgical outcomes in the shortest possible time. Typically, surgeons are prepared by Professor Cules Van den Heever, CRPM’s clinical advisor. The implants, surgery guides and representative reproduction of the patient’s skeleton are produced by AM and sent to Botswana, with a follow-up virtual preparation. The accuracy and efficacy of the implants produced meant a successful surgery in Botswana was a successful outcome for the SAIS project.”
Images: iStock.com, Portrait images: supplied
THE SAIS PROJECT
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