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Discussions
Neurofibromatosis and Working
- By Tank · Posted October 11, 2009
- In Living with a genetic or birth defect · 3 replies
- I had went in earlier this year to apply for a job with Subway in Plainwell Michigan, only to be told by the manager he could hire me but I would have to work in back he had to be considerate of his customers ...
Its so hard!
- By lucaboy10 · Posted August 22, 2009
- In Birth defects · 1 reply
- Its really hard to have Hydrocephalus because I get worried like all the time and I cant be normal and I got hit by a car not long ago so that made it A LOT worse ...
leukodystrophy
- By lisajo · Posted July 17, 2009
- In Genetic conditions · 0 replies
- needing all the info.that we can get on this desease my 8 year old grandsonA.J. was diagnosed 3 weeks ago and seems to be progressing fast can any one tell us about ther experience and how fast the progression ...
I have hydrocephalus
- By jennifer131 · Posted June 25, 2009
- In Living with a genetic or birth defect · 20 replies
- My name is Jennifer. I am 25. I have hydrocephalus. I have had it since birth. I would like to talk to others that have it. Feel free to message me ...
4th Biennial Down Syndrome Research & Awareness Conference 2009
- By KristyColvin · Posted June 13, 2009
- In In the news · 0 replies
- For Immediate Release: Franklin, TX Parents of children with Down syndrome (DS) are universally concerned about the wellbeing of their child’s health, development, future, and connecting with other DS ...
Bannayan-Ruvalcaba-Riley Syndrome
- By Cteach · Posted April 26, 2009
- In Living with a genetic or birth defect · 0 replies
- My 9 year old son was recently diagnosed with Bannayan-Ruvalcaba-Riley Syndrome. He was 6 months old when he started to get fatty tumors (lipomas). Initially the docs said that if they were not malignant ...
Did anyone else see this? Parkinson's Disease Research
- By DMBM · Posted April 13, 2009
- In Genetic testing · 0 replies
- http://blog.wired.com/wiredscience/genet ics/index.html ...
Telling the kids
- By DMBM · Posted April 10, 2009
- In Genetic testing · 4 replies
- I think I asked something similar yesterday but does anyone have anything to say about telling off-spring about the testing...particularly for Dominant genes. I know the usual advice is to not tell before ...
Heart problems
- By stephsarge85 · Posted March 12, 2009
- In Learning your child has a genetic condition or birth defect · 2 replies
- hi my name is stephanie and my son has herterotaxy and he is dextrocardia. there are alot of severe problems with his heart. Its amazing that he is even alive and now he has had surgery for the second ...
hydrocephalus group
- By DRIVER · Posted March 1, 2009
- In Living with a genetic or birth defect · 13 replies
- Many people who have heard my story are amazed, but I have lived it and it seems normal to me. I was born with hydrocephalus and porencephaly. I was very sick for a long time with seizures and being in ...
MCAD
- By dallasmama · Posted January 11, 2009
- In Genetic conditions · 5 replies
- I am looking for anyone who has a child with MCAD. Our daughter was diagnosed as being a carrier, but the test results unfortunately did not show enough info to determine if she actually has the disorder ...
Non Compaction Cardiomyopathy
- By heartofgold2001 · Posted August 8, 2008
- In Genetic conditions · 1 reply
- I just found out last year that I have this genetic birth befect.And I am 34 years old .Is there any one out there that has is please let me know any thing about it .I also have problems with my left ...
