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Prader Willi Syndrome

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by

Taylor Densmore

on 19 August 2014

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Transcript of Prader Willi Syndrome

Prader Willi Syndrome
Overview
According to the Mayo Clinic, Prader Willi Syndrome is a rare disorder present at birth that results in a number of physical, mental and behavioral problems.
Risks and Struggles
Social
Behavioral
Cognitive
Medical
Physical
Strengths of Family
Disabilities, illnesses, and mental health conditions of any kind affect the lives of all family members.
Resources and Help for Families
1 in 10,000 to 1 in 30,000 people worldwide have this disease
Statistical Information
Needed Resources
AWARENESS!
Advocacy
Prader Willi Syndrome Association
http://www.pwsausa.org/support/crisisteam/advocacy.htm
The Arc of North Carolina
http://www.arcnc.org/prader-willi-syndrome
In North Carolina - Online Support Group
http://groups.yahoo.com/neo/groups/pwsa-carolina/info
International
http://www.ipwso.org/
The furthest west a housing resource coordinator is located is in Charlotte.
What Does Prader Willi Syndrome Look Like?
Treatments
Activity #1
A lady by the name of Jane comes into your office after she was arrested for theft the month previously. You noticed she is severely overweight and around the 5 foot height range. Upon talking to her she informs you of her disease, Prader Willi Syndrome. After her session you do research to inform yourself on the disease and the struggles it causes.

What would be your plan of action?
Turning Point
Success
Self determination
Opportunities
Family members offer helping hands
Provide information
Communication skills
Ability to seek creative solutions
Children model their parents resilience and healthy attitudes
Tip: a parents perspective of the child's disability will be a greater influence on adaptation of other developing children in the home then the disability itself would. Keep it positive.
It is genetic
Characteristics are: Almond shaped eyes, narrow forehead, triangular mouth, short in stature, small hands and feet, fair skin, light hair and low muscle tone.
Resources:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002572/#adam_001605.disease.causes
http://www.nichd.nih.gov/health/topics/prader-willi/conditioninfo/Pages/treatments.aspx
http://www.amazingkids.org/content.aspx?SectionId=1&SubSectionID=141&utm_source=google&utm_medium=cpc&utm_campaign=sipraderwilli&_vsrefdom=sipwppc

http://www.arcnc.org/prader-willi-syndrome
http://www.fpwr.org/learn-how-families-deal-prader-willi-syndrome stories
http://rapidcityjournal.com/news/local/communities/boxelder/mama-s-girl-family-accepts-deals-with-prader-willi-syndrome/article_cbc6a6fe-5418-11e1-a636-0019bb2963f4.html
http://www.mayoclinic.com/health/prader-willi-syndrome/DS00922/DSECTION=treatments-and-drugs
http://www.medicalhomeportal.org/living-with-child
http://abcnews.go.com/GMA/story?id=8222023&page=1 story
Full transcript