This all resonates so much with me! For example, I am currently preparing for a surgery to shore up the ligaments in my ankle and the surgeon is planning to use tissue from an allopathic (deceased) donor who had non-hypermobile tissues, in conjunction with the synthetic band he’ll also put in. If I didn’t have hEDS, he’d use only the synthetic piece and not reinforce with the stronger donor tissue. He and I were just discussing this yesterday and you post is therefore very timely!
Is there any doctors other than rheumatologist who will diagnose. I have had my diagnosis for years but my friend is having trouble finding someone who will diagnose him. Major medical center??? Any help would be appreciated.
I went to VMP Genetics in Atlanta with Dr. Fran Kendall. She's an expert on EDS and other mitochondrial disorders. Be aware- they have a long wait time, but once you have all documentation in, you can join a waitlist and be seen in 1-3 months.
This all resonates so much with me! For example, I am currently preparing for a surgery to shore up the ligaments in my ankle and the surgeon is planning to use tissue from an allopathic (deceased) donor who had non-hypermobile tissues, in conjunction with the synthetic band he’ll also put in. If I didn’t have hEDS, he’d use only the synthetic piece and not reinforce with the stronger donor tissue. He and I were just discussing this yesterday and you post is therefore very timely!
Is there any doctors other than rheumatologist who will diagnose. I have had my diagnosis for years but my friend is having trouble finding someone who will diagnose him. Major medical center??? Any help would be appreciated.
I went to VMP Genetics in Atlanta with Dr. Fran Kendall. She's an expert on EDS and other mitochondrial disorders. Be aware- they have a long wait time, but once you have all documentation in, you can join a waitlist and be seen in 1-3 months.
If it’s helpful to know, a pain management doctor diagnosed me. I have also heard of cardiologists diagnosing people as well.
This is such good information! I hope more providers/clinicians will become aware of all the reasons diagnosis is so important. Thank you!