Geneticist/Rheumatologist in NoVa?

Hi all!

I'm 30 years old and have been suffering with joint dislocations as early as I can remember. My knees have dislocated over 100 times, shoulder - 5 times, I've had a 13 hour surgery to realign my spine and my stomach sticks out due to no core strength. With my last knee dislocation, my ortho suggested that I may have EDS so here I am.

My main concern currently is, do I seek a rheumatologist or a geneticist and if so, can anyone recommend either in Northern Virginia/DC area?

Many thanks in advance. I look forward to getting to know all of you.

Tricia

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Hi Tricia and welcome!

There are very few "EDS experts" in the world and you are not far from two of them. Dr. Francomono at Greater Baltimore Medical Center and Dr. Levy at Johns Hopkins which is also in Baltimore are two genetecists who are highly acclaimed in the EDS world. People fly in from around the country to meet with them. It would be great if there was an EDS expert in every town and city, but that just is not the case, but at least you can get to one of the great ones in about 45 minutes if it's not rush hour and no wrecks on the Beltway.

I am in Maryland and we have been putting together a list of great doctors...the list is almost 5 pages now. Do you know that out of about 40 EDSers giving the names of their teams of doctors that not a single person could recommend a rheumatologist? Not because no one went to a rheumy, but because everyone had bad experiences. Rheumatology does not seem to be a helpful specialty in this area.

If you need any resources or have any questions, feel free to ask.

Gentle hugs...

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Dr Clair Francomano in Baltimore - she is a wonderful geneticist and a genuinely nice person as is the rheumatologist listed next.
and Dr. Joseph Laukatis in DC. He knows about EDS because I saw him when I lived there. He did not treat me badly like many rheumatologists I had seen in the past.

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SlapaSmileOn

I agree with you on the rheumatologists but Dr. Laukatis in DC was good and here in KY I think Dr. Takagishi seemed very knowledgeable about EDS and they both have great bedside manner. I only saw Dr. T because my family doc here wanted me to see a rheumatologist and his conclusion was "yes you have EDS but as you know there is not much we can do different than what you are already doing" That being said I don't know if he would make suggestions and treatment options for someone who was going to him for the first time for a diagnosis. I am pretty sure he would recognize EDS. When I saw both of these doctors my symptoms were already being treated so I don't know how good they would be for someone new to EDS but I would like to hope they would be helpful.

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When I lived in NoVa, my rheumatologist was Dr. Kathleen Price. I loved her. She didn't diagnose me with EDS, Dr. Tinkle here in Cinci did, but she did catch a lot of other things that had been missed (like my gluten intolerance, which was a huge life-changer).

I have Classic/Hypermobile type so there isn't much that can be done medically, really it's just PT and other home therapies for me at this point, but I have fibro as well so I see a rheumatologist for those issues.

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If you can afford to go, Dr. Gary Kaplan in McLean treats many EDS patients. He diagnosed me with Type 3 and does amazing supportive work with osteopathic manipulation, acupuncture, supplements, etc. He even helped get my microscopic colitis into remission (I was already gluten and dairy free). He's an integrative medicine doctor, so he combines osteopathic medicine with alternative therapies. He's also boarded in pain medicine. He's out-of-network for me, which is why I mention affording him. I used to think he was very expensive, until I saw a run-of-the-mill rheumatologist for 10 minutes and was charged more (at least to the insurance). Dr. Kaplan is well worth a few extra bucks.

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I tried to see Dr. Price a few years ago, but she wasn't accepting new patients. Any decent rheumy in the DC area is hard to get into.

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