I have learned that for an EDS patient it takes average of 10 years for a diagnosis. The tests are simple and any physician could do them following simple q&a and straightforward tests. Such a long time before diagnosis results in terrible outcome for the patient. The story of “its in your head” is often repeated here.
It’s not about giving 40 chances. Most doctors refused to listen and have performed tests that were unlikely to yield any results. They disagree with me the patient and if their assumptions were not correct they would often refuse to continue.
We need to centralize the knowledge base. Take what top specialist in their area of expertise know and review what support groups discover to see if we can improve.
For example, in small fiber neuropathy there is a physician Dr. Oaklander, she was so tired of hearing about people not getting the correct treatment she created a list of possible causes and tests.
Not treating autoimmune induced SFN can results in serious complications, while treating it can results in complete remission.
These stories are often repeated among many different communities. These communities found the top specialist in the country and proper tests, but their doctors refuse to work with them.
The business idea is a great idea. I just mail my doctor yearly to check if procedures X, Y and Z are done in my country yet and always get a polite nay. But that’s for a situation where the root cause is well understood only the procedure too expensive for our doctors to implement. (With all respect for the failings of US healthcare, the availability of best in class procedures is pretty awesome.)