Washington Post Article: -- A doctor struggled with a rare, incurable syndrome [Ehlers-Danlos]. Now she helps others overcome it.

Wayne

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A doctor struggled with a rare, incurable syndrome. Now she helps others overcome it. -- Patients with Ehlers-Danlos Syndrome are often misdiagnosed or dismissed as hypochondriacs. That’s what happened to Dr. Alissa Zingman.

Here's the conclusion to the article:

Last year, Zingman launched the Ehlers-Danlos Syndrome Research Foundation to try to address that need [insurance]. Working with other specialists, she hopes to train more doctors in EDS treatment and to publish enough research that such treatments might be covered by insurance in the future.
“There are so many people with EDS who need help. It’s soul-crushing sometimes to get these phone calls and emails,” she said. “Because I know it could easily be me on that phone call.”
 
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hapl808

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Yeah, I read it and still don't really understand. Fancy physical therapists and osteopaths that teach people with EDS how to move correctly so they don't dislocate, etc? That sounds fantastic, but I was unaware that such a thing exists and I know some people with classic EDS who have been to the best specialists and therapists and they are only barely able to keep it together.
 

hapl808

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I hate the metaphor of "overcoming" or "battling" chronic illness.
The only metaphor I hate more is that of the warrior. As if it were some noble pursuit in defense of others. Generally the warrior paradigm doesn't refer to battling against something for your own gain, but of protecting your land or loved ones. Being a chronic illness 'warrior' usually involves alienating most of your loved ones as they dismiss and diminish your struggles and illness.

I am not a chronic illness warrior anymore than people in a deadly famine are hunger warriors. I am just struggling to get by and make the best of things on a minute-by-minute basis.
 

lenora

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Exactly....the word she should have used is manage. I know a few people with EDS and some actually still manage college and jobs.

I see an osteopath myself (I have never been diagnosed with EDS, so I don't believe that's a problem for me), still the people I know don't look well at all, but they can still control their symptoms. Now what will happen as they age is a big ? mark.

Most end up with major disk problems, but then a lot of us (me included) have the same as we get older.

The osteopath has helped me tremendously....this is probably my 6th one. It's hard work if the Dr. only practices myofascial work and 30 minutes is more than enough for both the doctor and the patient's body. If you're thinking of seeing one, make sure they only do muscular work, acupressure....that type of thing. Not all are created equal....bear that in mind.

There should be no neck "snapping" as there are other ways to control the same problem without it being too hard on us. Chiropractors are generally too harsh for us and their methods don't hold.

Yes, it's best if we can learn new postural techniques. A lot of problems can be stopped by that alone....so if you're really young, it's worth giving the extra attention to that....I couldn't because of congenital problems.

I have to say that an osteopath gave me a huge part of my life back. Sadly, he died but I've always found another, although never as good as the original. Osteopaths are trained to help the body heal on its own and are often into natural healing methods. I'm glad this Dr. has this clinic....I would advise new people with EDS to seek someone like her out. Jaw issues are often a big problem for people with EDS and a good osteopath can treat something like TMJ and other conditions. Yours, Lenora.