Ehlers Danlos Syndrome (EDS) Treatment in Arizona?

Hi,

I have EDS, specifically L-HSD. I was diagnosed at Mayo Jacksonville. Jacksonville is the only location that has the hyper mobility clinic. I have heard Baylor has a hyper mobility clinic as well that would be closer to you. If you’re just looking for diagnosis, you could speed the process up by getting a local provider to order the Invitae 92 genes connective tissues panel. 13 of the 14 sub types can be found on that panel. If your results come back negative, then you could still have the gene negative one that everyone seems to have including myself (HSD and hEDS) you would still need a clinical diagnosis based on exclusion though. The great part about the hypermobility clinic in Jacksonville is they have a patient education program. It’s a series of online classes that teach you as much as science seems to know about it. At the end of the day it’s just to help you manage things as the pathophysiology of EDS is still unknown and there are no concrete solutions

There is someone in California that I aspire to see one day Dr. Tina Wang, you might want to look her up too. She specializes in fascia and does “Hydro desiccation” or “Hydrodissection” , if I said that right. I forget how it’s properly spelled. People with EDS have a wide range of weird problems and for me personally with the problems I have, my chronic 20 year long tenosynovitis issues that stem from EDS, I believe she can help me through these procedures. After the Hydro dissection procedures which to my knowledge would flush out all the myofibroblast’s that have replaced regular fibroblasts in the extra cellular matrix, then I would do PRP to heal, as my issues are with tendons and ligaments. All this will be out of pocket, so I’m saving for it.

Good luck to you, I really mean it

Jack

@jackbartlett123 My son was diagnosed with local HSD at Mayo. I suspect I am similar but not diagnosed. Your post caught my attention because hydrodissection is recommended potentially for my newly diagnosed superficial peroneal mononeuropathy. I do not know why I have this condition. I have thought it might be from a car accident 2021. After watching my son deal with pain for years they initially thought was ulnar nerve entrapment I have to wonder if something about my makeup (HSD) is contributing. Have you had hydrodissection?

@maryannt70 Im very sorry to hear all that. I share a similar hereditary situation I think, I believe I inherited this from my dad. He had similar quirky musculature problems as I do, and he died of a rare connective tissue cancer at 56 called malignant fibrous hystiocytoma. That was in 2005, I think that cancer is called something else now, but it all kinda tracks.

No, I have not gotten the treatment yet. I have been unemployed for a few months and have had to put my hydrodissection goals on hold. The provider that got be hooked on the idea is named Dr Tina Wang out in California. I’d love to find someone local to Atlanta, but this is a video of one of her talks. If the link below doesn't work it’s called

Fascia Science: Its Relation to EDS & HSD with Dr Tina Wang - 2024 GLC

@maryannt70 Im very sorry to hear all that. I share a similar hereditary situation I think, I believe I inherited this from my dad. He had similar quirky musculature problems as I do, and he died of a rare connective tissue cancer at 56 called malignant fibrous hystiocytoma. That was in 2005, I think that cancer is called something else now, but it all kinda tracks.

No, I have not gotten the treatment yet. I have been unemployed for a few months and have had to put my hydrodissection goals on hold. The provider that got be hooked on the idea is named Dr Tina Wang out in California. I’d love to find someone local to Atlanta, but this is a video of one of her talks. If the link below doesn't work it’s called

Fascia Science: Its Relation to EDS & HSD with Dr Tina Wang - 2024 GLC