Thank you so much for this advice, Barbara! I agree that the key is really having a doctor who is flexible enough to understand (or learn) that that there are symptoms which, though no cause for alarm in a patient without EDS, could well indicate something serious in an EDS patient. It’s fantastic- and encouraging- that you have been able to get your GP on board, and also that you’re working to make the health care system more amenable to this sort of approach for patients with “invisible” chronic diseases in general. I’m also glad to hear that you’ve had good results with the diamox/zyrtec/zantac regime- I certainly plan on talking with (probably not my current, but another more flexible) GP about it.
My research is actually on developing detection systems for the study of toxic species (protein aggregates) in Alzheimer’s disease. Interestingly enough, we expect vague similarities between the mutation-induced misfolding events in some forms of Alzheimer’s disease, and the altered collagen structures observed in some forms of EDS!
All the best 🙂