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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. |
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]
GI HOLIDAY DEATHS ARE A RISK
An example is a 28 yr old
young woman who died suddenly three days after
Thanksgiving. 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 also had two
more confirmed GI necrosis deaths this year – one during an
admission in a psychiatric unit where she was overfed.
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. Also, in both the Medical Alert
section of our web site and the general medical section, we
have placed an alert titled,
Risk of
Stomach Necrosis and Rupture.
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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