A little encouragement for members who have EDS

Here’s a link to an article those with EDS might find interesting & encouraging! Thanks to Mod Support for this info :grinning:
Revenge of the gaslit patients: Now they’re Ehlers-Danlos scientists (statnews.com)


Thanks Jules!
I read the article and unfortunately EDS Treatment Centers which is a goal of the Medical University of South Carolina (MUSC) is slow going. Having people involved and scientists who have EDS and known the frustration of dealing with the lack of education in the medical profession is an asset for moving advocacy forward for EDS patients. I cannot tell you how many times I have been “gaslit” by doctors and still do.

I volunteered for the MUSC gene study and submitted my dna sample and encouraging family members to participate. I super excited about their recent gene findings that have not yet been published.

check it out:


Glad that EDS patients with instability May get some more meaningful help. It’s long overdue. D


Is there a link between EDS and Eagles?

An Atlas Orthagonal expert on C1/C2 instability treats a large number of EDS patients as Hypermobility can cause instability. Some think Eagles and instability may be related in some way, maybe the styloid ligament calcifies to try & stabilise head? Not all EDS or Eagles patients have C1/C2 instability. Instability can be caused by head trauma. I have seen that several members on here have instability, Eagles, tmj &/or EDS. They are all so closely co-located in the same area. Medics/jaw teams told me instability is linked to tmj. But not sure if any published research on the possible links between these conditions. D