The American medical system has ignored and abandoned the 600,000 or so people with EDS within the country. The first in the list of articles in 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. 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. Within a month, my appointment schedule was full for a whole year. So I stopped making appointments for new patients. However, I hope to be able to see some new patients again, starting in early 2023. Check this page after January 1, 2023 for more details.
Meanwhile, 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.
Alan Spanos MD (Updated November 2, 2022)