This week's question -
I need to see an EDS doctor. Where do I find one?
My answer -
This was actually a phone call I got not too long ago, and it was difficult to explain to this woman that unfortunately there is not one type of doctor that takes care of patients with Ehlers Danlos Syndrome.
Our healthcare system has become so specialized which has created a lot of very intelligent experts who know everything there is to know on a subject, however this has created a lack of generalists or doctors who help manage care over a variety of body systems.
If you or someone you know has Ehlers Danlos Syndrome, you know there are often multiple body systems involved. Therefore, unfortunately you often need a doctor for each one, as well as ideally a knowledgeable or at least caring primary care doc who can help manage everything and provide referrals when needed.
If you still want to know where to start, most of my patients have the following members on their care team
-Geneticist
-Orthopedist
-Pain management/physiatrist
-Physical Therapist
-Rheumatologist/allergist/immunologist
-GI doctor
-Psychologist
-Dietitian
And sometimes many more.
The Ehlers Danlos Society keeps a directory of doctors you can find here --> https://www.ehlers-danlos.com/...
This is a great place to start!
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