Pathway for PWS
Several years ago I was asked to fill out some surveys for Global Prader-Wiil syndrome Registry. It was something easily done at home. They provided a 75-dollar Amazon gift card for the surveys. I am not sure if that is still offered.
Pathway for PWS states it is a natural history study. It is paving the way for advances in treatment. It is sponsored by NORD which is National Organization for Rare disorders. Other sponsors are Prader-Willi syndrome USA, PWSA Australia, and Foundation for Prader-Willi research Canada.
The site has legitimate backing and states “it paves the way for drug development.” One researcher remarked “it’s like a quilt; every little piece is important.”
The site has over 2644 participants. Usually there are a total of about 300 people answering the survey questions at the same time. Surveys ask questions about food safe zones, medical history, mental health, vision, and neurological history.
A round pie graph that will display how others answered can be accessed, when you finish surveys. I found these pie charts fascinating.
I was asked, “how did you ascertain the patient had PWS?” After responding to other survey questions, I accessed the graphs. A blood test was used by 76 people, 25 had symptoms, no blood test, 11, blood test negative along with symptoms. I thought the blood test was always able to detect PWS. This proved me wrong.
Another survey questioned “how often the person with the syndrome bargains for food?” The chart showed 62 people bargained two times a week, 15 people bargained several times a day. I can only imagine what the parents of those bargaining often experience each day. If you changed the routine, bargaining would become even more frequent.
Shares with others: 48 people do not share and 42 will share. Sharing has always been a problem for our son. It has caused many family difficulties.
A young cousin wanted to look at a book Robert had as a child. Tough negotiations took place, and the cousin got the book. A page was torn and an outburst transpired from the book owner. I was blamed by the parents for not teaching my child to share.
The middle school our son attended had another child in the resource room, with the syndrome. Their teacher joked the “if they have finished their work, I give them one pencil and paper to share.” I thought this was tremendously funny, since neither one would give an inch.
Another survey got big responses. When asked “is the person with PWS is always supervised?” A large number 900 responded “yes.” “Do you alert others to person’s situation?” Another large number said “no.”
This was startling to me. Imagine the burden of care that is on the family? Personally, I am someone who processes problems by talking with others. I also write about my experiences. Everyone Robert and I encountered generally had one teaching moment, whether they wanted it or not!
I would encourage parents to become informed. Our Prader-Willi Syndrome News has great information for parents and caregivers.
I am not a professional, but it appears from graphs that behaviors decrease as people with Prader-Willi syndrome age. I have certainly found this to be true with my son. This would be welcome news to parents’ struggling with numerous meltdowns.
I have also learned that often people with the syndrome are spiritual and helpful. They have a desire to please and want to learn.
Acquiring this information helped me to cope and grasp what others were experiencing. I would encourage others to register. The new drug VYKAT was approved by the FDA. A survey on its effectiveness is sure to be undertaken. Certainly, there is hope on the Horizon.