Dear Dr. Roach: After 11 years of medical uncertainty, over 50 doctors, and my daughter’s diligence, my 19-year-old granddaughter was finally diagnosed with Ehlers-Danlos syndrome (EDS). This is a rare condition that affects the connective tissues and comes with a variety of issues, most of which she has experienced.
While it was a blessing for her to learn that she was not crazy and her symptoms were not just in her head, she is facing a life filled with chronic pain. While there is a facility in Florida that specializes in EDS, we are looking for specialists near where we live.
S.M.
EDS is a spectrum of 15 or so related genetic conditions with variable symptoms, due to abnormalities of the connective tissue. There are four overall families: hypermobile EDS, classical EDS (similar to hypermobile but with more skin symptoms), vascular EDS, and kyphoscoliotic EDS. Hypermobile is the most common by far. The diagnosis is made clinically by an expert and often confirmed by genetic testing.
I get asked a lot for experts across the country for a particular condition. There are a few approaches I take: One is to recommend an advocacy or support group, either in-person or online, where you can talk to other people (and their families) who are also dealing with this condition. (Very rare conditions may not have these.) The Ehlers Danlos Society (Ehlers-Danlos.com) has a support group in your area, where you might be able to get a personal recommendation.
I also look at larger hospitals, especially teaching hospitals, in the area. Again, I found a major teaching hospital in your area that advertises expertise in EDS. Unfortunately, this doesn’t always mean that they do, but it’s another place to start.
I don’t recommend physician-rating sites; I don’t find them reliable at all.
Dear Dr. Roach: Over the past year, I have heard of so many people who have experienced vertigo for the first time. They have to do physical therapy to reset the crystals in their ears. Could this somehow be related to COVID?
N.G.
A recent study reviewed all published data on dizziness and vertigo following COVID infections, and it found a wide discrepancy in the reported rates of dizziness or vertigo after COVID infections — from less than 1% to 20%. There were several different causes, ranging from damage to the vestibular nerve, Meniere’s disease, vascular vertigo, and benign paroxysmal positional vertigo. (BPPV is normally associated with crystals in the organ of balance, deep in the inner ear.)
In any given person, it’s very difficult to determine whether their episode of dizziness (or whatever symptom) is due to COVID. Most people have had COVID, and it may not be related to the new symptom, especially one as common as vertigo. Only well-done trials can really give an idea of the risk, and so far, the trials have not reached a consensus.
Still, I want to take the time to remind readers that a new vaccine is available, and most people should get it. Talk to your doctor about whether it’s right for you and, if so, what the optimal timing should be.
Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to [email protected]
