Last Thursday I took both of my daughters up to see Dr. Bader at the NE Indiana Genetics Center. Sure enough, as I expected, they were both diagnosed EDS. They only had Bieten scores of 7. One of them has thumb hyper and not finger, the other has finger, but not thumb. Isn’t it odd how all of this sorts itself out in different bodies?
We sent off their blood for testing to see if they have the same genetic blip that I do.. but my biggest hope is that by being diagnosed while still in their late teens, they can make smarter choices and avoid some of the complications/challenges that have beset me in the last year.
We expect to get the blood test results back from my parents within a week ( they sent theirs in several weeks ago), but it will be July before we get the results back on the girls.
On a more positive note, this Thursday is my first trip up to see Dr Lavallee. While I am dreading the long early drive( especially since it looks like I may be making it alone), I am very excited about getting some more insights and some more treatment/prevention tips and tricks.