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PWSA (USA) is an
organization of families and professionals
working together to promote and fund research,
provide education, and offer support to enhance
the quality of life of those affected by
Prader-Willi syndrome. |
Care Providers
and Supportive Living
This page is designed to enhance and support the work of residential
care and other providers for people with PWS. If you are a
residential care provider, please
Click Here to submit your provider information so your services can
be included in our Provider Database which is utilized by families
living with PWS around the country. This is a great way to let people
know what you do. If you are already in the database, please check to
see if the information is up-to-date.
Training and Continuing Education Opportunities
PWSA (USA) has available many resources to assist providers. Several
are posted in our “Links and Resources” section for you to view and
download.
Links and Resources [click here]
ANOTHER GI
HOLIDAY DEATH
A 28 yr old young woman died suddenly on Saturday
11-26-05. She was at a good weight, and had been in
placement for several years. She was home for Thanksgiving
and "ate a lot" according to mom. Friday she was
vomiting profusely. On Saturday, she had diarrhea, but
said she was hungry. She passed out, and mom called an
ambulance. They were unable to revive her. No
autopsy. They said they found fluid in her lungs, so
put her death as asphyxiation. Our physicians believe
the primary cause of death was related to the GI necrosis
and/or perforation deaths we have been seeing particularly
over the holidays.
We are taking several actions to further alert parents
and providers – AND NEED YOUR HELP, YOU
CAN SAVE A LIFE! We need to get a warning
to all providers and see that they get a very clear warning
to all parents who have adult children in placement.
With the help of Dr. Barb Whitman, we have put together a
sample letter that providers can use when they send a person
with PWS for a home visit.
The classic situation is that the person with PWS is slim
due to being in a controlled environment, but when he/she
goes home for a home visit (especially the holidays)
everyone gets lax thinking a few pounds won’t kill them.
Well, a few pounds might not kill them, but an overeating
binge might! Help us spread the word.
Click here for sample
letter |
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Support:
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