Help finding EDS Doctors in Illinois

We have three family members with EDS and are having a problem finding doctors who REALLY understand EDS. We live in Illinois and our insurance is limited to Illinois treatment centers. Any suggestions?

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I also am from Illinois. I am fortunate enough to have insurance that lets me go pretty much anywhere so I will be seeing the Geneticist in Cincinnati who specializes in EDS. However, I did research before I chose to make the trip and I was recommended Dr. Barbara Burton in Chicago. It would be worth looking into, her office was very kind when I was looking into my options. I wish you luck. I am curious to know if we are anywhere near the same place in Illinois. I live in Springfield, Can you tell me which city you live in? It would be so nice to know someone locally who goes through the same things.

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Hi. Thanks for your reply! We live in Beardstown about 45 minutes west of Springfield on 125. Please feel free to contact us. It is good to know others understand about EDS. Talk to you soon.

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I googled Dr. Burton and began to make an appointment when I noticed she works with children. I am asking her office for help finding a Doctor who works with middle aged, pudgy codgers like me. So, thanks!

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Dr. Marcia Willing at Washington University and Children's Hospital in St Louis is excellent! She works with kids AND adults.

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My 15 year old daughter, Faith, was diagnosed last May with EDS-HM by Dr. Jarred Zimmerman, a sports medicine doctor with Carle Physicians Group in Urbana, IL. We also visited Dr. Brad Tinkle at Cincinnati Children's Hospital in March, to get more information, a confirmation of diagnosis (which he agreed with Dr. Zimmerman), and also some ideas of managing her symptoms. Dr. Tinkle was not covered by our health insurance, so we called to get costs for a consult and then just took the money out of savings and went to see him. He spent almost an hour visiting with us, answering questions and sharing ideas. He has written two books on EDS that you can order through and I would highly recommend both both.
Faith also had open heart surgery on January 4 for an ASD, which they doctors feel is unrelated to her EDS. However, the recovery has been extremely difficult for her. Since she was resting quite a bit and not using her muscles, the laxity of her tendons got worse. Between joint problems and a new diagnosis of gastroparesis, she is one sick kid. She is missing 2-3 days of school a week. Fortunately, her teachers are extremely accomodating. The Vice-Principal formulated a 504 Plan for her, based on the information you can find on the EDNF website (very useful!).
We are considering visiting with Dr. Willing in St. Louis, because she is in-network for our health insurance. Please share any information you have about her.
Good luck!

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