Trisomy 13 (Edwards Syndrome)

Sources

Patau Syndrome. Inherited Health, 24 Dec. 2010. Web. 7 Mar. 2011. http://www.inheritedhealth.com/condition/Trisomy_13/375.
Patau Syndrome. The Free Dictionary, 2011. Web. 7 Mar. 2011. http://medical-dictionary.thefreedictionary.com/Trisomy+13+Syndrome.
Trisomy 13. Lifespam, 8 Nov. 2010. Web. 4 Mar. 2011. http://www.lifespan.org/adam/healthillustratedencyclopedia/1/001660.html.
Dextrocardia with Situs Inversus. National Institute of Health, 2 Feb. 2011. Web. 7 Mar. 2011. http://www.rarediseases.info.nih.gov/GARD/Condition/6268/QnA/29345/Dextrocardia_with_situs_inversus.aspx.
Trisomy 13. The New York Times, 8 Nov. 2009. Web. 7 Mar. 2011. http://health.nytimes.com/health/guides/disease/trisomy-13/overview.html.
Trisomy 13 and 18. Lucile Packard Children's Hospital at Standford, 2011. Web. 4 Mar. 2011. http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/genetics/trisomy.html.
Genetic Counselors. The University of Utah, 2011. Web. 6 Mar. 201. http://learn.genetics.utah.edu/content/disorders/whataregd/counselors/.
Genetic Counseling. Genetic Diseases, 2010. Web. 9 Mar. 2011. http://www.genetic-diseases.net/genetic-counseling/.
Statistics by Country for Chromosome 13 Trisomy Syndrome. Wrong Diagnosis, 26 Jan. 2011. Web. 9 Mar. 2011. http://www.wrongdiagnosis.com/c/chromosome_13_trisomy_syndrome/stats-country.htm.
Trisomy 13. Drugs.com, 11 Aug. 2009. Web. 10 Mar. 2011. http://www.drugs.com/enc/trisomy-13.html.

Right now there is no cure for Trisomy 13. The possibility of finding a cure is not a sure thing, but it is not something that is impossible. Since there is no way of preventing the disorder scientists don't have much information about it except how it is caused. Also, because of the rareness of the disorder there are not many studies that can e done. Only time will tell whether or not a cure is ever found.

What are some organizations that can provide support?

trisomy.org (SOFT)
livingwithtrisomy13.org
NORD (National Organization for Rare Diorders)
GARD (Genetic and Rare Diseases)

What limitations does the person have?

The only limitations of this disease are things that happen within the body. Usually they have problems with breathing, deafness can occur, child is difficult to feed, they have heart failures, seizures, vision problems, and other problems. Unfortunately, because of the short life spam there isn’t evidence of things that children with Trisomy 13 would do as youths or adults that they’re limited to.

What is everyday life like?

The daily life of children with Trisomy 13 isn’t what people think. They are actually pretty normal. Of course, they have physical disabilities and facial features which people aren’t used to, but they also smile, laugh, think, and have fun. They are special human beings. Parents of children with the disorder never think about their child being different. They only worry about spending meaningful time with their child. Children with Trisomy 13 have the same personal qualities as everyone else does; only thing is they require extra help.

How can the disaese be treated?

There is no cure for the disorder, only treatment to manage symptoms, for children with feeding problems some special formulas, techniques, and positions can be used. It all depends on the patient’s individual condition.

Life Expectancy of Trisomy 13

More than 80% of children with Trisomy 13 die in the first month, there have been a few reports of babies with Trisomy 13 surviving only till their teens, but it is unusual. Of mothers who haven’t given birth, there is a 60% chance that it will be still birth.