My practice is in Chapel Hill, North Carolina, five minutes from I-40. The office is designed around patients’ comfort and convenience. Parking is right outside the door. Appointments are on time, and are unhurried: I allocate up to an hour for each follow-up appointment (and well over two hours for a first appointment). Phone calls are not delegated to office staff: I answer all calls myself.
My practice is now devoted solely to helping people with Ehlers Danlos Syndrome (EDS), and conditions that resemble it, to get better care in a medical system that largely ignores them. Note that I do not accept any insurance payments. This means patients themselves pay for my services, and I supply them with detailed receipts, so that they themselves can seek reimbursement from their insurers. Medicare and Medicaid do not reimburse patients for my services, but some other insurers do.
I am currently not accepting appointments for new patients. I will do so beginning October 1, 2018. Instructions on the procedure will be posted on this page on that date.
The reason for this delay is the work backlog due to the very small number of doctors interested in treating EDS and similar conditions. (Geneticists diagnose such conditions, but do not treat them.) As one doctor who treats EDS has remarked, “If we were an animal species, we’d be on the “critically endangered” list – or perhaps given up as already extinct!” That’s why I’ve written the articles on my website (at AlanSpanosMD.com) that explain how family doctors, and other “generalists,” can both diagnose, and treat, most patients with hypermobility conditions. If they will do this, then most people with these conditions will get much-needed help, whether or not they ever get to see a doctor with a special interest in conditions like theirs.
So I strongly recommend that you download the relevant articles, and see if you can interest your local doctor in following the instructions they contain on diagnosis, and treatment. The articles are entitled I Think I May Have EDS; Joint Hypermobility Diagnosis for Non-Specialists; and Medical Care of Patients with a Hypermobility Disorder. Even if you’ve had your condition diagnosed already, don’t skip the first of these three articles, because it gives specific suggestions on how to encourage your doctor to get more involved with your care.
Even if your local doctor doesn’t want to address your diagnosis, you may still be able to interest them in your treatment. The suggestions in the article, Medical Care of Patients with a Hypermobility Disorder, are appropriate for most people who have trouble with loose joints, whatever their final diagnosis may turn out to be.
Other articles on the website are also relevant for people who may have a hypermobility disorder, but haven’t had a clear diagnosis yet. For instance, if you have loose joints, and problems with your stomach or intestines, then it would be appropriate for you to print the article EDS and the Gut, and ask your doctor to read it. The same is true of the article, Physical Therapy, Exercise & Braces for People with EDS: this should help your physical therapist to help you, whatever diagnosis is eventually made.
Whether or not you can interest your local doctor in learning about your condition, you yourself should learn as much as you can about it. Other than the articles on my website, useful websites to do this are that of the Ehlers Danlos Society at ehlers-danlos.com, and EDSawareness.com, and support groups at inspire.com and elsewhere.
A final word, on treatments to avoid. While waiting for an appointment, some people with EDS and similar conditions seek help from practitioners of “alternative” or “integrative” medicine. I’ve worked closely with a number of such practitioners over several decades, and I respect what they do to address certain medical conditions. However, I do not recall a single patient with a hypermobility condition who benefited from their approaches. Nutritional supplements, hormonal manipulations, treatments for alleged toxins or “chronic Lyme disease” and so on have been universally unhelpful. I conclude that if any of these patients are helped by such treatments, they must be quite rare. However, I do not include chiropractic or acupuncture in this blanket dismissal: a few of the patients who come to me have clearly been helped by these two techniques. However, success is very much dependent on the exact chiropractic or acupuncture techniques used, and these are very variable from one practitioner to another. In general, the people who respond, do so quickly: within about 6 treatments or less. I encourage you to be very cautious in signing up for longer courses of treatment than this.
The remarks in the previous paragraph are based on impressions gleaned from the experience of several hundred patients with EDS and similar conditions, not from a scientifically-controlled study, so they are tentative. But I feel obliged to state them, because non-mainstream treatments are so widely available, and so many of the patients I see have spent a great deal of time and money on them, usually to no avail.
Alan Spanos MD, MA