The American medical system has ignored and abandoned the roughly 600,000 people with EDS in 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, I recently decided to return to clinical practice from retirement, to provide a diagnostic service for people living in North Carolina, with a possible Ehlers Danlos Syndrome. But note that state licensing regulations require that for me to see you, you need to live in North Carolina.
In most cases, EDS can be diagnosed, or ruled out, based on a video appointment via a home computer or tablet. Only in a few cases does this need to be followed by an in-person appointment, or genetic testing, or both.
You can request a video evaluation by sending me a brief email (no more than 10 lines please) explaining why you’re seeking it. Include your address and phone number. I will then send you details of how my practice works, so you can decide whether to proceed with an appointment.
My evaluation will include specific, written recommendations for treatment, that can be passed on to your local doctors and physical therapists. This should help you get better medical care, although you will still have to learn about your condition and help your local doctors learn about it too. At the very least, your diagnosis should put a stop to doctor visits where you’re told there’s nothing wrong with you, or it’s all in your mind, or it’s fibromyalgia, or that nothing can be done for you.
Note that I see only patients aged 22 and above. For younger patients, I recommend Pediatric Nurse Practitioner Andrea Roberts, whose practice in Raleigh focuses on EDS and similar conditions, and who can see patients in person. Her contact number is 267 394 0192.
Alan Spanos MD