New Patients

The American medical system has ignored and abandoned the  600,000 or so people with EDS within the country. 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. The path to medical treatment, and even to interest from a doctor, is by way of a diagnosis. So, in 2022 I decided to return to clinical practice from retirement, to provide a diagnostic service for people living in North Carolina. The result was a growing flood of emails, mainly from patients whose emailed accounts of their illnesses made it very likely that they had an EDS. Within a month, my appointment schedule was full for a whole year.

A colleague has commented that “medical care with a one year wait is not medical care, but a parody of it.” I agree with that. So I have stopped making appointments for new patients.

This deeply unsatisfactory situation is specially sad because the diagnosis of EDS and similar conditions is, in most cases, quite straightforward. Any physician can do it by following some straightforward, though time-consuming, diagnostic steps based on the patient’s history and physical examination. I have spelled out the protocol in an article in this website. But after four years, I haven’t heard of a single doctor or nurse-practitioner who has used it to diagnose a patient. This fact speaks volumes about the deteriorated state of the American medical system.

I’ll continue to work at supporting ways that patients who may have EDS can get better medical care whether or not they have had an “official” diagnosis. I will be rewriting the articles on this website and adding new ones to further this aim.

I’ll also continue to try to interest younger colleagues in developing clinics to provide comprehensive care for people with EDS and similar conditions, though I can’t be optimistic about this. Several 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 this country. So for the foreseeable future, patients themselves will continue to have to learn about their conditions. They will then have to seek out doctors interested in learning about them from educational materials brought by the patients themselves.

Note that younger patients – childhood up through age 21 – can be assessed and treated by Pediatric Nurse Practitioner Andrea Roberts. Her practice in Raleigh focuses on EDS and similar conditions. Her interim phone number is 267 394 0192 but this is likely to change soon, when her practice location moves.

Alan Spanos MD

(Updated August 17, 2022)