Prader-Willi Syndrome Support - South Africa

09/08/2026

Wishing all the wonderful women in the lives of people living with PWS the best women's day!

We are so grateful to the mom's, gran's, sisters, drs, therapists, nutritionists, teachers, carers and other women who support those with PWS in South Africa. It is a complicated medical condition with unique social, emotional and behavioural issues to understand and we appreciate all the support.

30/07/2026

The data in this registry is so important for understanding PWS. Please take part.

Did you know? Friendliness and spirituality are among the top traits reported by caregivers in the Global PWS Registry.
Help advance PWS research by joining or updating your Registry profile: https://hubs.la/Q04q6GpD0

17/07/2026

It’s been an honour to represent IPWSO at the 17th African Society of Paediatric and Adolescent Endocrinology (ASPAE) Congress in Dakar, Senegal. 🌍🇸🇳 Thanks for the opportunity.

From IPWSO: Karin Clarke, IPWSO’s Vice President, gave a presentation on PWS, sharing knowledge and raising awareness among healthcare professionals from across the region.

The congress programme also featured a PWS case study presented by Dr Joel Dipesalema from Botswana.

It has also been a great opportunity to connect with several IPWSO grant recipients from Nigeria, including Dr Theresa Nnaji, Dr Chioma Ahumaraeze, Dr Stella Oji-Onuoha and Dr Oluwadamilola Oladipo, and to hear more about their efforts to improve support for people with PWS and their families.

We are grateful to ASPAE for bringing together healthcare professionals from across Africa to learn, collaborate and improve care for rare diseases such as PWS.

23/06/2026

What an amazing achievement by
Willemien as she completed her 250th Parkrun on Saturday 27, at Riverside Parkrun, Mbombela.

She enjoyed the excitement and fuss from friends and family who are so proud of her, as are we at PWS Support SA.

She is very motivated and enjoys the outing every Saturday morning.

This is a wonderful example of how when people living with PWS get into good habits,they are motivated to keep going.

21/06/2026

I hope all the dads are being spoilt today as we celebrate their support, guidance, fun, strength, love and sacrifices for their children with PWS, siblings and wives

10/06/2026

One of the good things about becoming a parent of a child with PWS has been to connect with families from all over the world who have a loved one with PWS. It truly is a global village.

During awareness month this connection becomes stronger as many of the associations around the world share stories to raise awareness. This year we reached more people in other countries via our social media.

One of our followers is Charles, who we were so pleased to connect with. He volunteered to share his story. Usually we only share stories about South African’s and African’s living with PWS but sharing Charles’ story today in celebration of our global reach in May

Charles is 37 years old and is living with Prader Willi Syndrome. He stays in a supported living establishment in the UK. He has his very own two bedroom apartment with two bathrooms and kitchen/lounge. In the kitchen, the fridge and freezer have highly secured locks on the doors which keeps him safe.

During the day he goes out walking to maintain his weight and also rides an indoor exercise bike.

He grew up with his parents who ensured he lived in a food secure environment and maintained a healthy lifestyle and weight, which he continues to do whilst staying in supported living.

One thing that can be difficult for him is when other people eat sweets and chocolate in front of him.

Understandably this is incredibly hard for people living with PWS and another reason why it’s important to raise awareness and understanding of how stressful it is for them.

In many societies kindness is shown by giving and sharing sweet food. For those with PWS it’s the opposite, kindness is shown by not doing this and not eating in front of them.

07/06/2026

On the 5th and 6th of June Delene Pillay did a wonderful job hosting a table at the Autism Expo at College Street School Nahoon in East London.

Raising awareness about PWS at an autism expo is a great way to educate about the similarities and differences between autism and PWS. In addition a child that is not diagnosed with PWS as an infant may find their way to a PWS diagnosis after being referred to Neurodevelopmental clinics or to other doctors and therapists specialising in the field.

The orange balloon arch and bright attractive table with a laptop showing videos of PWS was very popular. Thanks to Delene who also said she was very busy chatting to all about PWS.

College Street School Nahoon

04/06/2026

Thanks to two of our local newspaper’s in Cape Town for this article about Prader-Willi Syndrome, Bianca and the school she attends, Heatherton House who contacted the paper.

It was on the front page of the Constantiaberg Bulletin and in the middle of the Tattler.

It was published last week during awareness month but I’m sharing it now as we already had so many posts scheduled for May.

31/05/2026

Behind every diagnosis is a family learning to navigate a new world.

As part of our Behind the Diagnosis series, we share the story of Jacolene Schoch and her son Bernard, who lives with Prader-Willi Syndrome (PWS).

Bernard was finally diagnosed at the age of two through genetic testing, after numerous scans and even a biopsy failed to provide answers. For his family, the diagnosis brought both clarity and the beginning of a new journey.

Now nine years old, Bernard is a strong-willed boy with a caring and nurturing heart. He enjoys puzzles, helping with meal preparation, and has an impressive memory that often surprises those around him.

Life in the Schoch household, where Bernard is lovingly supported by his parents Jacolene and Victor Schoch - who has been their rock since day one - follows structured routines - something that is essential for children living with PWS. Like many families on this journey, their days include school, homework, playtime, and the careful planning that helps Bernard feel secure. Some days go smoothly, while others bring unexpected challenges.

One of the biggest hurdles has been learning how to manage food-seeking behaviour, emotional meltdowns, and repetitive routines. Bernard struggles with change, and finding the right balance of medical support, including medication, was an emotional rollercoaster for the family.

In the early years, Jacolene also faced judgement from people who did not understand why Bernard could not simply be given treats or extra food. Setting boundaries and advocating for her son was difficult at first, but over time it helped build the strong support system their family relies on today.

Amid the challenges, there have been moments of incredible joy.

When Bernard took his first steps, his family was overjoyed - especially because some doctors had believed he might never walk independently. Today he continues to surprise them with his determination, his problem-solving abilities, and his growing independence. He is even learning to swim, something his family once thought might never be possible.

Jacolene hopes people will understand that Prader-Willi Syndrome is far more complex than simply constant hunger. It affects children both emotionally and physically, and every child with PWS experiences the condition in their own unique way.

Her message to other families walking a similar path is simple:
Hang in there. Even when it feels hard and doubt creeps in, you are doing a good job. Try to take it day by day, and appreciate the good days when they come.
Because on this journey, those good days matter more than words can say.

If you are a parent living with PWS and would like to share your story, please reach out via DM or email.

🌐 praderwilli.org.za
📘 facebook.com/pwsasa
📩 [email protected]