Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

Prader-Willi Syndrome Growth Hormone Deficiency and Treatment

The first research on using growth hormone (GH) with Prader-Willi syndrome (PWS) began in 198I.  Two key pioneers in this field were Dr. Moris Angulo and Dr. Phillip Lee, both members of our PWSA (USA) advisory boards.   In June 2000 growth hormone was the first (and to date the only) drug approved by the U.S. Food & Drug Administration (FDA) for the treatment of Prader-Willi syndrome.  Since that time, an untold amount of children and adults with PWS have benefited from the use of growth hormone.

Questions still come to the PWSA (USA) office daily on the use of growth hormone.  Some for which we have the answer or research to back it, and some where answers from professionals still varies.  At what age do you start growth hormone?  Should adults with PWS be on growth hormone?  Are there risk factors with growth hormone?   What do I do if insurance denies my child growth hormone?  These are just a few of the many questions we will try to assist you with through research reports and articles from well known professionals that deal with PWS.  We also have available a booklet, Growth Hormone and Prader Willi Syndrome, (given free to new parents in their Package of Hope) and a chapter on growth hormone in the 3rd edition of our Management of PWS book.   Some articles cannot be published due to the journal copyright laws, but we plan to give you the key outcomes of the articles through abstracts.  We are starting this section in March 2008, so visit this site often for additions.  For further questions or support on this topic, call the PWSA (USA) office at 800-926-4797 or email pwsaweb@gmail.com for further assistance.

Janalee Heinemann, Director of Research & Medical Affairs
Barb McManus, Director of Family Support

edited: 02/09/2012

 

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