Prader-Willi Syndrome Support Group SA Fundraising page
- By: Karin Clarke
- Short URL: https://www.backabuddy.co.za/prader-willi-syndrome
We are a Support Group run by parents for people with Prader-Willi Syndrome.Prader-Willi Syndrome (PWS) is a complex genetic condition that affects every aspect of a person’s life. It is most commonly known for the fact that people with PWS become obsessed with food anytime from about 2yrs old onwards. Unless they are strictly managed, they will overeat (known as hyperphagia), become obese and will have a variety of associated medical problems. However hyperphagia is not the only issue, people with PWS have weak muscles and poor co-ordination, learning difficulties, behavioural issues, OCD behaviours, such as skin picking, cognitive or intellectual impairment, emotional instability, lack of normal sexual development, lack of maturity and often mental health problems as adults. PWS is caused as a result of a genetic abnormality. To explain very briefly, some information is missing from the paternal chromosome 15. In 99% of cases it is not an inherited disorder and it seems to occur completely randomly. Babies are born extremely weak (low muscle tone) and are unable to feed. Most need to be tubefed for a while. They do not cry or react much to their environment… They are commonly referred to as “floppy”. They experience delayed development, most only sit at about a year and walk after the age of two. Speech is also delayed. Early diagnosis gives the child a more positive start with early intervention and sensible eating plans. Growth hormone therapy helps. Apart from improving growth it helps improve muscle strength and allows them to get stronger and develop quicker. There are also great tried and tested eating plans that reduce the huge anxiety that PWS people have with food. As long as they know they are getting "x number" of meals in a day (no doubt) and as long as they know they are not going to get any other food (no hope) they will relax and stress less about food. Every child is an individual and not every person affected by the syndrome will have all of the characteristics at the same time. They are also seen in varying degrees, as it is a spectrum disorder. They are extremely easy children to love as they are sweet, kind and thoughtful. They like to please and try hard to do their best in their daily activities. That is why our association refers to them as “People with Strength”. They survived such a tough start as babies and overcome so many challenges. They often surprise us with their achievements and positive attitude.
Our goals are:
1) To raise awareness of PWS and increase understanding of the challenges they face, such as always wanting to eat. If people know this about the person with PWS they will know not to feed them and to keep food out of their sight.
2) Offer support and educate parents on how best to care for people with PWS by providing them with guidance in the form of articles, talks, videos and advice. The website and Facebook page are also sources of information that is updated
3) To improve medical treatment for people with PWS by aiming to get the approval of GHT for PWS in South Africa as it has been approved all over the world. We also aim to increase knowledge of PWS in the medical profession.
4) To provide parents with a chat group where they can communicate and share with other parents who have the same experiences and feel less alone in the world.
Funds will be used for the following:
- Awareness initiatives
- Maintaining our website and online platforms and associated costs
- For Printing Costs for medical Institutions e.g. Genetic clinics.
- Other admin expenses
- Affiliation to the International Prader-Willi Syndrome Organisation
- Support Group training and networking initiatives
To follow us and learn more go to:
- May 31, 2021 - R 100.00
We Love You Uncle Jody" - Uncle Sadiq
- May 28, 2021 - R 100.00
- "I love you my Jody!" - Jorga
- May 28, 2021 - R 100.00
- "We support you all the way, love you. " - Paul
- May 24, 2021 - R 100.00
- "Please help me by raising funds for Awareness for my brother Jody and many others with PWS" - Kaycee
- May 24, 2021 - R 100.00
- "Thank you for your support in helping me and many others with PWS" - Jody
- May 21, 2021 - R 100.00
- "Please join me to help Our loved one’s with PWS" - Rika
- May 21, 2021 - R 50.00
- "Great idea - thanks for setting up this page" - David
Prader Willi Syndrome Support Group Cause
We are a Support Group run by parents for people with Prader-Willi Syndrome. Prader-Willi Syndrome (PWS) is a genetic condition caused as a result of a small piece of missing information from the paternal chromosome 15 which affects the hypothalamus in the brain. This causes the person with PWS to have an obsession with food and an insatiable drive to eat. They are also challenged by having low muscle tone and developmental delays, learning difficulties, behavioural and social challenges, emotional instability and lack of maturity.