wondering if anyone has a child with Prader Willi syndrome

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1

Hi there,
Just wanted ask if anyone has a child with Prader Willi syndrome. I have a son who is 11 yrs old, with PWS. If any one wants to talk about issues dealing with PWS. Please email anytime. thanks,
Jennifer

2

My aunt has a 20 yr old son with Prader Willi...I know she is part of a support group. She lives in Utah. Email me if you are interested in her contact info. [email protected]

Misty

3

Jennifer: You can call the San Diego Regional Center (858-576-2938)and if you're not already associated with that agency, someone there can help with resources relative to PWS.

4

Here are a few sites, online chats and suppport specifically designed for PWS. Then you can get a bunch of people who understand what you are going through and lend a loving ear:

http://www.familyvillage.wisc.edu/Lib_pws.htm

http://www.pwsausa.org/index.html

http://health.dir.groups.yahoo.com/dir/Health___Wellness/Support/Diseases_and_Conditions/Prader-Willi_Syndrome?st=10

As an instructional aide for many years, I have worked directly with some terrific students diagnosed with PWS from 3rd grade through adult and I treasure those times. These students were some of my favorites.

Best wishes and get connected. We all need support and a shoulder to lean on.

Joanna K-V
www.AisForAutism.net

5

Hi Jennifer,

I have a good friend who is very active in the Prader Willi community. Her name is Linda Ryan. She is located in Valencia, CA. If you will call me at (818) 515-0006, I will give you her contact information.

Stephanie

6

Dear Jennifer,

I have known one person with Prader Willi, and I just want to suggest that you make a plan for the future and try to get him started into a healthful diet plan that he likes. Since he is ll, he will be able to cooperate and be a big part of his lifestyle choice. If he gains a large amount of weight, then it will be very painful for all of you. ....and think of him, he is approaching teen life and he needs to be fit mentally as well as physically to get through that ! Get together some people who love him and make them part of his Dream Team so that he will not feel alone or isolated in his lifetime of trying to curb his appetite.

Carolyn N.

7

Hi J - My son is almost 11 and he was just diagnosed with Prader- Willi although he was misdiagnosed his whole life as autistic I am so relieved and now the PWS makes sense but he is SOOOOO sick I can hardly cope with the situation I am stuck in a really bad school system. Please tell me a little about your son I have never talked to another PWS parent.
Thanks.
Kate