Quote: "We have to count on doctors that can look passed the "normal" pain symptoms to find the cause of a problem and treat it."
People with PW will often eat anything - even spoiled or poisonous food and inedible objects.
Bill Sheadel was born with Prader-Willi Syndrome and has been praying for a cure for since he was just a little tot. He started volunteering for PWS studies at 8 years old. His first one was on growth hormones at the University of Washington. That was over 20 years ago and Growth Hormone Treatment for PW is now commonplace.
Some studies have simply been long distance help in the form of medical information and detailed surveys for the family to complete.
He has offered himself as a guinea pig at several universities.
He has suffered through lots of needles, scans and electrodes.
Many of those involved travel such as: Rochester, New York; Vanderbilt University in Nashville; and University of California in Irvine. Some were closer to home like Oregon Health Sciences University in Portland and University of Washington in Seattle. Back when he was little, I was sure that there was never going to be a cure. I was working hard just to learn how to help day to day him and manage this difficult disorder. Now I see the wonderful possibilities of a cure. Prayers and dedication from people like Bill have brought hope and promise to us all.
Through Prader-Willi Syndrome Association, we have an opportunity to learn from professionals who are experts in this rare disorder.
We can also share health care tips, ideas, stories, and advice with people who are going through the same things. Most other times we have to explain the Syndrome to everyone, often even to doctors. They have usually heard about it in med school, but rarely have a complete knowledge about it or have other patients with it. It's better now than it used to be though. When Bill was younger, most doctors never even heard of Prader-Willi Syndrome. It was very difficult to get the medical advice and proper care under those circumstances. There are so many medical problems unique to them.
People with PW will often eat anything: even spoiled or poisonous food and inedible objects. In addition: many people with PW don't vomit. That makes a very dangerous combination! They have to be watched very carefully 24 hours a day 7 days a week.
Their pain threshold is abnormal.
Typically people with PW have a high pain threshold. For Bill I find that some things that should hurt don't and other things that shouldn't hurt do. It is extremely difficult for him to pinpoint where a pain is or what type of pain it is. For example whether it is a sliver in his toe or a sprained ankle he would say his "foot hurts". It is very difficult to determine what is an emergency. He has had life threatening illnesses that seemed like nothing and miner ones that seemed urgent. We have to count on doctors that can look passed the "normal" pain symptoms to find the cause of a problem and treat it. And this is just a couple of the critical issues with the Syndrome. I could go on and on.
Having resources and networks for PW is essential so that we can find and treat common medical problems and even educational, emotional, and socials ones.
Proper diagnosis and guidance from the Prader-Willi Association has brought us valuable knowledge and peace of mind that couldn't be found anywhere else. Sincerely - nowhere else! I have no doubt that Bill would not be alive today without it. If someone you know might have this disorder, I encourage you to guide them to get testing for Prader-Willi Syndrome and get free information and guidance from the Prader-Willi Association (USA) - www.pwsausa.org
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