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.

"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>.

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/

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. 

"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>.

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>.

Post 6: How Diagnosed?

In most cases Prader-Willi starts to show symptoms in infants.  Usually the most obvious is very loose muscles and skin, almost flabby looking.  One way to test and make 100% sure you or your child is Prader-Willi positive is to take a test.  The second way of diagnosing is with a 'FISH' (fluorescent in situ hybridization), but this way can only identify those who have the deletion of chromosome 15.  The final way for diagnoses is to take a Methylation analysis, this will identify all types of Prader-Willi.

"Prader-Willi Syndrome Diagnosis & Treatments | Foundation for Prader-Willi Research." Foundation for Prader-Willi Research |. Web. 12 Mar. 2011. <http://www.fpwr.org/prader-willi-syndrome-diagnosis-treatments>.

Post 5: Chances for affecting offspring?

There are three types of scenarios that could either produce Prader-Willi postive, Prader-Willi negative, or a mix of both.

1. Pp x Pp =  25% PP- children affected, 50% Pp- children affected, and 25% pp- children not affected
2. PP x PP = 100% PP- children affected
3. pp x pp = 100% pp- children not affected

Post 4: How is the disease in the population?

From recent tallies it is estimated that one in every 12,000 to 15,000 people are diagnosed with Prader-Willi Syndrome.  Even though it is considered a rare disease Prader-Willi is the biggest cause of obesity. Also, Prader-Willi is found in all genders and races.

"QUESTIONS AND ANSWERS ON PRADER-WILLI SYNDROME." Prader-Willi Association (USA). 23 Mar. 2010. Web. 12 Mar. 2011. <http://www.pwsausa.org/faq.htm>.

Post 3: Genotype and Chromosomal Abnormality?

Genotype:  Pp x pp = PP, Pp, pp

Prader-Willi Syndrome is due to the cause of the lose of the region of the 15 parental chromosome.  Researchers have found that chromosome 15 is the chromosome that is associated with having very fair skin or hair.  Researchers have not yet found any other specific genes in chromosome 15.  Most cases have a deletion of a section of the parental chromosome and the rest have replications of two chromosomes, two from the maternal side, instead of two from both mother and father.

"Prader-Willi Syndrome." Genetics Home Reference. 06 Mar. 2011. Web. 12 Mar. 2011. <http://ghr.nlm.nih.gov/condition/prader-willi-syndrome>.

Post 2: How is Prader-Willi inherited?

People affected with Prader-Willi usually have to inherit a copy of the chromosomes from both parents.  This concludes that it is an autosomal recessive genetic disorder.

"Prader-Willi Syndrome - Genetics Home Reference." Genetics Home Reference - Your Guide to Understanding Genetic Conditions. 06 Mar. 2011. Web. 12 Mar. 2011. <http://ghr.nlm.nih.gov/condition/prader-willi-syndrome>.

Post 1: What is a genetic counselor?

According to the National Society of Genetic Counselors they have made up the following the following definition for themselves:
"Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process integrates:

• Talking with families and figuring out what the chances of disease recurrence and occurrence are with in a family pedigree.
• Educating families about prevention, resources, research, inheritance, management, and testing opportunities.
• Finally, we they talk to the families about how to make good choices based off the circumstances of the disease, and the risks of the genetic condition."

Qualifications for a genetic counselors are having a minimum of a master's degree in genetic counseling or a related field. Genetic counseling degree includes training in the fields of human genetics and psychology.  Most genetic counselors are certified by the American Board of Genetic Counseling. 

A genetic counselor works with a variety of different patient combinations. They work with couples who are expecting children in the near future to understand the risks of certain genetic disorders that could possibly occur. They work with patients to understand certain genetic disorders and diseases directly effecting them. They also spend a lot of time looking over the family history and what it means from a genetic point of view.

"Genetic Counselor Job Description." Web. Monday Mar. 2011. <http://careers.stateuniversity.com/pages/7798/Genetic-Counselor.html.>   

"Genetic Counseling." Human Genome Project Information. Monday Sept. 2008. Web. Thursday Mar. 2011. <http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genecounseling.shtml>.

"Hemophilia & Genetics Counseling." 2010. Web. <http://www.thereforyou.com/about-hemophilia/gist-of-genetics/genetics-counseling.html>.