Sunday, November 13, 2011

Sources

http://www.nichd.nih.gov/health/topics/down_syndrome.cfm
Multiple Interviews with: Dr. Dudley Bell MD
http://kidshealth.org/parent/medical/genetic/down_syndrome.html
http://ghr.nlm.nih.gov/condition/down-syndrome

Is a cure for DS likely?

Because Down’s Syndrome is chromosomal disorder, there is no cure that has been found. However, getting a DS child into therapy is a great and effective way to treat the disorder. 

Some organizations that can help or provide more information:

Band of Angelswww.bandofangels.com


Central Illinois Down Syndrome Organizationwww.cidso.org
Dads Appreciating Down Syndromewww.dadsappreciatingdownsyndrome.org

Down Syndrome Research Foundation:www.dsrf.org

Families Exploring Down Syndromewww.FamiliesExploringDownSyndrome.org


National Association for Down Syndromewww.nads.org
Northwest Down Syndrome Assocationwww.nwdsa.org
Omaha Down Syndrome Parents Networkwww.odspn.org
Parents of Children with Down Syndromewww.pcdsmi.org
Riverbend Down Syndrome Parent Support Groupwww.riverbendds.org

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

The quality of life for a DS kid greatly depends on the home a DS child is raised in. If the parents have tried resources like speech therapy, physical therapy, and occupational therapy, the child’s “quality of life” is likely to be better than a child simply neglected. Typically, in America, a child with DS is more likely to be comfortable and happy because American families have more access to programs and therapy, and are more likely to keep a special-needs kid. In other countries, a child may be more frequently given up for adoption, or be sent through government-funded programs which in most countries, don't take very good care of the child. Because most DS kids have slight to severe mental retardation, most have a "helper" or nurse to help them get through the day.

How can the disorder be treated?


       Putting DS kids through programs like speech therapy, physical therapy and occupational therapy can help them develop social skills and muscle tone that they need to survive. Also, DS children may be helped by extra attention throughout school. Physical therapy will help develop muscle tone and fine-tune motor skills. Speech therapy and extra help in school will help DS kids get used to the “real world” and to develop social skills. Occupational does much the same thing; a DS kid is simply guided through daily activities (occupations) by a trained professional. 

What is the life expectancy of someone with the disease?

A DS person’s life expectancy is directly correlated to the set of skills they’ve acquired and the environment they are in. There is no life expectancy set in stone because it varies from patient to patient.

What are the physical symptoms of the disease?

Some of the distinctive facial features of a DS kid include: flat face, upwardly slanted eyes, small hands and feet, low muscle tone, abnormally shaped ears, a short neck, white spots on the irises, and a deep crease in the palm of the hand. Most DS kids are also at risk for several other health problems like cataracts, slight to severe mental retardation, skeletal problems, celiac disease*, and a couple others.
*Celiac disease is a gluten allergy that often shows up during early infancy. The child’s immune system reacts to the gluten, and messes with its gut and causes digestive problems and general discomfort. Celiac can also cause weight loss.