The American medical system has largely ignored and abandoned the 600,000 or so people with EDS in the USA. The first of the articles on this website recounts how this came about. So these patients will continue to have to learn about their conditions themselves, and try to educate their doctors on how to treat them.
However, you can’t interest a doctor in a condition that you’re only guessing you might have. You need a diagnosis. That’s why one of the articles on this website explains how any doctor can make a firm “working diagnosis” in the great majority of cases of EDS. (Most of the diagnostic protocol can be done by a nurse practitioner or physician assistant, so long as it’s reviewed by their physician supervisor.) I suggest that you read that article, take a copy to one or more of your doctors, and ask them to see if they could use it to make a diagnosis in your case. The article is Joint Hypermobility Diagnosis for Non-Specialists. Mention that the an assistant can perform most of the diagnostic items, so this will not take much time for the doctor. Also mention that the diagnostic steps are divided into three visits, which are not very long, and the first two can be done entirely by an assistant. And explain that there is lots of information online on EDS, so ask if you could help your doctor by bringing them some handouts on treatment, as well as diagnosis.
The doctors most likely to diagnose you are primary care practitioners (PCPs), meaning family doctors, general internists and pediatricians. Rarely, a rheumatologist, orthopedist or other specialist may also help with diagnosis. And your online support group (state or local) may be able to recommend particular doctors who will collaborate with you on this.
I have retired from full-time office practice, but I see a small number of new patients, for EDS diagnosis and advice on treatment. State laws require that the patient has to be in North Carolina, where I’m licensed, for me to see them. So, if you live in NC, and have tried and failed to get diagnosed by your current doctor or doctors, as described above, then you could send me a short account, not over 100 words please, explaining why you want to see me. Send it to firstname.lastname@example.org. I can also see a small number of patients who already have a diagnosis, but whose symptoms are unusual, or unusually severe.
Meanwhile, I’ll continue to work in other ways to help people who may have EDS to get better medical care, whether or not they have had an “official” diagnosis. I will continue to write new articles to further this aim. Also, I continue to try to interest younger colleagues in developing clinics to provide comprehensive care for people with EDS and similar conditions. However, I can’t be optimistic about this. Such clinics have been attempted around the USA already. But most have sunk without trace, because of institutional factors that mitigate against them, in the profit-centered medical system of the USA. For the foreseeable future, the main way patients will get better care is to learn about their conditions themselves, then seek out doctors interested in learning from educational materials brought to them by those patients.
Alan Spanos MD (Updated January 1, 2023)