Armed with personal experience of caring for a loved one living with Prader-Willi Syndrome, Azhar Talib establishes the Prader-Willi Syndrome Association of Malaysia and makes it his mission to raise awareness of the rare genetic disorder and provide a support network for medical professionals, patients and everyone in between
How has the Covid-19 pandemic affected Prader-Willi Syndrome (PWS) Association of Malaysia’s activities?
We have not seen each other physically for almost two years, as circumstances have not allowed us to organise outdoor physical activities for our PWS members.
However, technology has helped us keep in touch and communicate. Our WhatsApp group has been a lifeline for many of our member caregivers, who use it as a medium to share information and updates, and motivate one another. Our Facebook and Instagram accounts are also very lively and active with updates.
But members will soon get to come together again, albeit online, at the Asia Pacific Prader-Willi Syndrome Conference (APPWS 2021) from October 29 to 31. This arrangement is unique for the association. Will you tell me more?
Due to the ongoing pandemic, a decision was unanimously reached by members of the Asia-Pacific region to hold a virtual conference. This is the first time that the conference is co-organised by four countries, namely Australia, New Zealand, Malaysia and Thailand.
Holding a virtual conference makes it more accessible for participants from all over the region to attend the sessions. It also allows families to watch the sessions together from the comfort of their homes. A virtual conference is also more affordable, allowing a wider reach across Asia to benefit from it.
For the past 12 years, this triennial conference was held in-person in Australia. Besides the conference fee, overseas delegates had to put money aside for their flight and accommodation. Expenses were high for families travelling for the conference with their PWS children.
What are the expectations from this conference?
For delegates attending the conference, it will be to receive up-to-date information on PWS. Delegates are wide ranging, and include caregivers, medical and allied health professionals, support agencies, residential providers, educators and their students.
While medical and allied health professionals are masters in their fields, there is not enough exposure on PWS as this is a rare and complex, neurodevelopmental genetic disorder. Thus, people living with PWS in Malaysia and elsewhere in the world form a minority of their country’s population. Through this conference, we aim to provide more insights into this rare disorder that alters functioning of the hypothalamus in the brain, causing a wide range of symptoms including impacts on cognition, growth, muscle development, metabolism and appetite.
People with PWS are always hungry. They want to eat constantly because they never feel full, and they usually have trouble controlling their weight. Many complications of PWS are due to obesity. The good news is that symptoms of this complex disorder can be managed, thus reducing the risk of developing complications and improving the quality of life of those living with this condition.
We hope that decision makers, such as government agencies and professionals, who attend APPWS 2021 will gain a better understanding of this rare disease, develop more empathy for people with this condition, and provided them with the same opportunities to education and employment as ordinary, ‘normal’ people.
What are the highlights of the conference?
The first day will focus on the science of PWS. There will be international expert from the medical field speaking on the latest PWS information and research. The second day will focus on care and support.
This year we will include a third day to feature presentations by parents, children and adults living with PWS. This new initiative is aimed at giving a voice to people with PWS and their caregivers, as well as furthering understanding and providing hope and inspiration to others.
Let’s backtrack a little. What led you to establish the Prader-Willi Syndrome Association of Malaysia?
My 21-year old daughter was diagnosed with PWS in 2000. At the time, it was very difficult to get information about PWS. My wife and I learnt about PWS together with the doctors who treated our daughter, and through observation of our daughter’s behaviour.
I started this association in 2016 to form a support network for other caregivers and people with PWS. Through the association, we aim to improve the lives of people with PWS by providing education and support services as well as raising public awareness and acceptance of PWS. We are lobbying the government to introduce policies that are inclusive for those with rare diseases, and we are campaigning on issues such as making medication for PWS accessible for all, by lowering the cost of medication.
What’s next for you and the association after the conference?
We would like to host the 12th International Prader Willi Syndrome Organisation Conference in 2025. Malaysia will put a bid for this conference at the 11th International PWS Organisation Conference in Ireland in 2022.
Hosting this international conference will help create greater awareness about our cause in Malaysia, and public awareness will help us identify and assist more people with PWS who are yet to be diagnosed. Currently, only 125 people in Malaysia have been diagnosed with PWS. This genetic disorder affects 1 in 15,000 births, so in a population of 32 million, there are a lot more people with PWS who we would like to reach out to and assist.
If we are successful in our bid and the conference is held in Malaysia, it will also help to establish the country as a centre of excellence for PWS.
What other activities are offered to your members?
We promote healthy lifestyle because children with PWS have very low metabolism rate and need daily exercise – without that, it would be extremely difficult to control their weight. Thus, we regularly organise runs, walkathons, jetskiing and family day events, just to name a few. For the parents of PWS, their caregivers and professionals, we organise bi-annual PWS Camps which are meant to provide them with greater knowledge about the care and management of people with PWS.