"About Prader-Willi Syndrome | Foundation for Prader-Willi Research." Foundation for Prader-Willi Research |. Web. 13 Mar. 2011. <http://www.fpwr.org/about-prader-willi-syndrome>.
Sunday, March 13, 2011
Post 13: Is there a Cure?
Currently there are no cures that can completely prevent Prader-Will syndrome. Researchers have been targeting treatments to specific symptoms. There are many organizations out today raising money to help support further research for cures, but none have been successful, yet.
Post 12: What are some helpful organizations?
Some websites to help families cope with Prader-Willi Syndrome are:
http://www.pwsausa.org/index.html
http://www.prader-willi.org/
http://amazingkids.org/default.aspx
http://www.fpwr.org/
http://www.pwsausa.org/index.html
http://www.prader-willi.org/
http://amazingkids.org/default.aspx
http://www.fpwr.org/
Post 11: Are there Limitaions?
The biggest limitation for a person with Prader-Willi is food. Since their brains dont know when to tell them that they are full they are constantly hungery, all the time. The most important thing to do is to plan out what they can eat each day and show them thats all they can have. Only do that after they have gone to a specialist about their eating habits so that they know why they cant eat.
"Prader-Willi Syndrome: Overview." PWSA of Victoria (Australia) Home Page. Web. 13 Mar. 2011. <http://www.pws.asn.au/general_guide.html>.
Post 10: How is Every Day Life and Quallity of Life?
During the first 6 years of life, children are slower at developing motor, language, and intellectual skills. After taking an IQ test children affected with Prader-Willi have 70% lower test scores than those who are not affected.
Throughout the day the indivduals have to fight the urge for compulsive eating; many go to psychologists, on a regular basis, to learn about how they can control their behavioral problems. Temper tantrums, depression, and the inability to hold social relationships are some of the problems they have to learn about and try to control.
The adults affected usually can not live independently, in most cases they live in group homes or with their family. Also the affected ususally end up not being able to have a career. If they do, they are constantly monitored and Realizing that they are obese, not fully sexually developed and not as fast moving as the people around them is one of the biggest causes for the behavior problems. In their homes they have to be carfully monitored with their food and money intake and out take.
Throughout the day the indivduals have to fight the urge for compulsive eating; many go to psychologists, on a regular basis, to learn about how they can control their behavioral problems. Temper tantrums, depression, and the inability to hold social relationships are some of the problems they have to learn about and try to control.
The adults affected usually can not live independently, in most cases they live in group homes or with their family. Also the affected ususally end up not being able to have a career. If they do, they are constantly monitored and Realizing that they are obese, not fully sexually developed and not as fast moving as the people around them is one of the biggest causes for the behavior problems. In their homes they have to be carfully monitored with their food and money intake and out take.
"Endocrine Dysfunction in Prader-Willi Syndrome: A Review with Special Reference to GH -- Burman Et Al. 22 (6): 787." Endocrine Reviews. Web. 13 Mar. 2011. <http://edrv.endojournals.org/cgi/content/full/22/6/787>.
Saturday, March 12, 2011
Post 9: How Treated?
There are several options that people can take to help prevent the symptoms that come with Prader-Willi. They include:
- Keeping up a healthy diet and controlling how much you intake each day. Make a plan of what you will eat each day will help control your cravings.
- Help with sex hormone development, testosterone for males and progesterone for females. This will help produce sex hormones.
- Making sure your child has good mental health is very important. Your child could possibly be at risk for obsessive compulsive disorder or learning how to control theirs moods.
"Treatments and Drugs for Prader-Willi." Mayo Clinic. 11 Apr. 2009. Web. 12 Mar. 2011. <http://www.mayoclinic.com/health/prader-willi-syndrome/DS00922/DSECTION=treatments-and-drugs>.
Post 8: Life Expectancy
People diagnosed with Prader-Willi will most of the time have a normal life expectancy. As long as their weight is maintained and their eating habits are healthy, they will having a fairly normal life style.
"Basic Facts about PWS." 04 Sept. 2010. Web. 12 Mar. 2011. <http://www.pwsausa.org/syndrome/basicfac.htm>.
Post 7: What are the symptoms?
There are multiple symptoms for Prader-Willi syndrome. Please keep in mind, in most cases, symptoms show up between the ages of one to six. Some of the symptoms include:
- Loose skin and muscles (flabby looking)
- Incomplete sexual development
- Chronic feeling of hunger
- Rapid weight gain
- Slow responsiveness
- Lack of eye coordination, may wonder to the side
- Delayed motor development
- Minor sleeping problems
- Light skin compared to other members of the family
- Behavioral problems
"Prader-Willi Syndrome Symptoms." Mayo Clinic. 11 Apr. 2009. Web. 12 Mar. 2011. <http://www.mayoclinic.com/health/prader-willi-syndrome/DS00922/DSECTION=symptoms>.
"Prader-Willi Syndrome." Genetic Disease Foundation. 2001. Web. 12 Mar. 2011. <http://www.geneticdiseasefoundation.org/genetic-diseases/prader-willi-syndrome/?_kk=prader%20willie%20syndrome&_kt=44663b98-5847-4903-b9ed-49a73baf7c37&gclid=CLeZ_aWWyqcCFQOt7QodQ25OEA>.
Subscribe to:
Posts (Atom)