Jessica - posted on 05/31/2011 ( 1 mom has responded )
If you think your child may have Prader-Willi Syndrome or if you have received a medical diagnosis, please reach out to this amazing organization. There is a lot of info on the website and you can contact FPWR to be connected with other families. There is so much hope!
The Foundation for Prader-Willi Syndrome, www.fpwr.org. Also our Facebook page is:
Prader-Willi Syndrome (PWS) is caused by a lack of active genetic material in a particular region of chromosome 15 (15q11-q13). Before you read the following long list of possible symptoms, keep two things in mind 1) your child may not exhibit all of these issues 2) people with PWS usually have wonderful, loving personalities and they are great at so many things! PWS is just a small part of who they are!
Here is the medical description in case it helps anyone reading this post:
Besides eating issues, individuals with PWS usually exhibit cognitive challenges with measured IQs ranging from low normal to moderate intellectual disability. Those with normal IQs usually exhibit learning disabilities. Other issues may include speech apraxia/dyspraxia, short stature, small hands and feet, scoliosis, sleep disturbances with excessive daytime sleepiness, undescended testicles in males, high pain threshold, and infertility. Behavioral difficulties may include obsessive-compulsive symptoms, skin picking, and difficulty controlling emotions. Adults with PWS are at increased risk for mental illness. PWS is a spectrum disorder and symptoms vary in severity and occurrence among individuals.