Hi PhoenixDown,
I hate that the doctor did not check for the other types of EDD or some other genetic disorder. Maybe you have types I/II or type IV. Can you order a 23ME test? You can get the test kit online. Maybe that can tell you more info about what genes you carry.
Maybe you have something different than EDS. What are your symptoms? You need to go to different geneticist. The other one was piss poor if they can’t do anything else besides EDS. From what you said it sounds like they did nothing. I had a dermatologist preform a skin biopsy on me it it came back positive for a connective tissue disease. I also went to Dr. Diana’s husband for an eye exam and it showed the abnormal artery to vein ratio and the beading. I also score high on the Brighton scale. I am text book. I am seeing a geneticist soon . I have a lot of over lapping symptoms from multiple types. As Dr. Diana would say I am pretty ill.
Sorry I am having trouble with my phone posting.