Struggling to Find Care for Ehlers-Danlos Syndrome

Oh Vixen, I feel your pain. Guess that’s the point of this app, huh? It’s incredibly taxing. I saved up the $750 I needed to go see this specialist biochemical geneticists next week after an 8 months wait. I’ve had some good luck here and there with doctors at least no traumatizing me, but not actually digging into my medical data and looking at the whole picture. It’s so hard. This doctor will get my ducks in a row and make all the referrals I need to people who know what they’re doing. I hope.

This has been a huge struggle for me. This is a new diagnosis for me and it seems like most doctors don’t want to deal with EDS.

Yes, not many doctors are knowledgeable about it. I’m still looking for my official diagnosis because no one covered by insurance knows much about it, what I’m going to have to do if find the nearest knowledgeable geneticist who is willing taking new patients or willing to put me on the waiting list and have my pcp write a referral for that specific doctor and then my Medicaid insurance will cover it. Downside is I’m also ASD and ADHD and that puts a lot of the pressure on me to find a doctor who will take me, I’m already trying to apply for disability mostly alone so far, my partner tries to help with doctor calls because I have phone anxiety but it’s a bunch of work, and my bf is often busy making money so we can keep up with things okay. Both the medical systems and the disability systems are not very well designed for people with chronic issues in general which is ridiculous for both but disability especially. I have a rheumatologist and a pain management guy, I got the genetic test through labcorp so I know it’s hEDS and not one with a marker yet unless they messed up the sample which is possible because it was taken like a week before my rheumatologist realized my insurance needed a prior authorization to complete the damn test at all. It’s tough and exhausting trying to get everything done