Sunday, March 13, 2011

What are the physical symptoms of Prader-Willi Syndrome?

A person with the disease will have hypopigmentation (which is fair hair and skin compared to the rest of their family), small hands and/or feet, narrow hands with a straight ulnar border, speech articulation defects, eye abnormalities, thick saliva with some crusting at the corners of their mouth, almond shaped eyes, narrowing of the head at the temples, and obesity.

What is the life expectancy of a person with Prader-Willi Syndrome?

A person with PWS will be able to have a normal life expectancy if they contol their weight, since general health is good in patients.

How can the disease be treated?

Since obesity is the greatest health problem, litmiting food intake will help control that. Exercise will also help to increase the lean body mass.
Growth hormones have been used to improve agility and physical strength in Prader-Willi Syndrome Patients. But, there have been some concerns with the growth hormones regarding lung function, so you should discuss the growth hormone option with a doctor.
Tesosterone has been used to correct the small penis in an infant boy.
At Puberty, hormone replacement has been used to correct low levels of sex hormones.

What is everyday life like? What is the quality of life?

The quality of life has improved over the past twenty years. If the weight of the person is controlled, then the life expectancy will likely be normal. Although, the constant need of restriction on food, and behavior management mayput a strain on the family. Family counseling may be needed.

What limitations will the person have?

A person with Prader-Willi Syndrome will need to be careful with their food intake. Since there is a genetic inanbility to satisfy hunger, with a decreased utilization of calories, the person will need to watch how much they eat. If they do not, they may over-eat. Over time, this will ead to obesity.

What are some organizations that can help a family cope with a child's disorder?

Here are some websites to help a family cope:

http://www.dailystrength.org/c/Prader-Willi-Syndrome/support-group

http://www.pwsausa.org/links/

http://www.pwsausa.org/support/

How possible is it that a cure will be found?

As of right now, there is no cure for Prader-Willi Syndrome. But, there is research being done for new treatments, and eventually a cure.