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I hope every got to listen in on the Q&A from Cincinnati Children’s Hospital. It will be posted on UTube soon. Also, check out their Facebook page. The doctors Dr. Derek Neilson and Dr. Ken Goldschneider were full of good info, especially for pediatric management of EDS. They estimate that really the number of persons with EDS is one percent or about 3 million people in the United States. Instead of 1 in 10,000. I agree that that number has to be higher, so that would be 1 person per 100 people. There are 4 in my house with EDS and if I include my extend family that, number is higher. Also, I want to know – what percent of your family members have EDS? . In my family I think it is closer to 90 to 100 percent. When I was in school studying genetics if someone had a dominant trait 100% of offspring had it. Therefore, don’t understand why online it says that person with EDS have only a 50% chance of passing on to their children. If all you need is one copy of the gene to be affected. Right? EDS is not like Cystic Fibrosis in which you need two copies of the gene to be affected and only one copy to be a carrier. Therefore, if both parents have the gene for CF then 25 percent of their offspring will be carriers, 25 percent will not have the gene, and 50 percent will have the disease. 100 percent of my kids have EDS. Also, 100 percent of my Grandmother’s kids have it. I also, believe all my cousins and their kids have it.
Thanks,
Shonda
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