We are also struggling in the hypermobile EDS (hEDS) community with many similar things! Prevalence now 1/500 to 1/250. Care and diagnostic protocols were updated in 2017 after 30 years to show systemic illness. But most doctors we see don’t even believe it is systemic. Have systemic issues and seeing the same parallels you mentioned. The Norris lab just identified a kallikein gene family disruption (they think it is multi-gene). But the issue discovered shows our collagen is forming properly, but can't be maintained because of protein creation and activation mechanisms being broken. It showed it is causing damage to the neuroimmune pathway. And interestingly, they are now referring to our illness as Neuro EDS.
Early on with the injuries of the past six years, we identified the parallels and that the underlying mechanisms seemed to be so similar with hEDS and Lyme. The “Complicated “ documentary really highlights this and is so parallel with “Under Our Skin” and “Follow the Silenced”. We have our story of a whole family with hEDS navigating through diagnosis, seeking treatment, and managing through Covid typed up, and we would gladly share it!
We are also struggling in the hypermobile EDS (hEDS) community with many similar things! Prevalence now 1/500 to 1/250. Care and diagnostic protocols were updated in 2017 after 30 years to show systemic illness. But most doctors we see don’t even believe it is systemic. Have systemic issues and seeing the same parallels you mentioned. The Norris lab just identified a kallikein gene family disruption (they think it is multi-gene). But the issue discovered shows our collagen is forming properly, but can't be maintained because of protein creation and activation mechanisms being broken. It showed it is causing damage to the neuroimmune pathway. And interestingly, they are now referring to our illness as Neuro EDS.
Early on with the injuries of the past six years, we identified the parallels and that the underlying mechanisms seemed to be so similar with hEDS and Lyme. The “Complicated “ documentary really highlights this and is so parallel with “Under Our Skin” and “Follow the Silenced”. We have our story of a whole family with hEDS navigating through diagnosis, seeking treatment, and managing through Covid typed up, and we would gladly share it!
There are some dealing with all three illnesses!🥹