Ehlers Danlos Syndrome - New Diagnosis

Posted by lovemyfamily2003 @lovemyfamily2003, Aug 26 11:09pm

Hello, my teenage daughter is being evaluated soon by cardiology, for possible EDS diagnosis. I believe the hypermobile kind of EDS. Who is the best doctor to see? Are there good doctors for this at the MN location? Thank you.

Hello, my teenage daughter sees a cardiologist this week for an evaluation for EDS. I am anticipating a possible hypermobile EDS diagnosis. Can some advise me on which Mayo location is best for this condition? I am assuming there are great doctors to treat the condition in MN, which is closest for us. I just want to make sure she sees the best possible physician. Thank you.

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Hi @lovemyfamily2003, welcome to Mayo Clinic Connect. I've merged your 2 messages into one thread that can be accessed from both the Bones, Joints & Muscles group and the Visiting Mayo Clinic group. I also added it to the Heart & Blood Health group. That way everyone will be brought together in one place.

Let me connect you with other EDS members and discussions that I think you'll find helpful. Members, like @lisafl @jthigpen @kariulrich @blossom2016, can share their experiences with EDS, some of whom are treated at Mayo Clinic MN or FL.
– Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/
– Possible Ehlers-Danlos Syndrome with craniocervical instability https://connect.mayoclinic.org/discussion/possible-ehlers-danlos-syndrome-with-craniocervical-instability/

@katemschultz posted a similar message as you did when she was preparing for her first EDS visit to Mayo in Rochester
– What to expect at Mayo Clinic, Rochester https://connect.mayoclinic.org/discussion/what-to-expect-at-rochester

@lovemyfamily2003, I would be inclined to recommend the Mayo location closest to you. You can read more about EDS care at Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/care-at-mayo-clinic/mac-20362179 The Mayo advantage is that teams work together. Thus, regardless of location, your daughter will benefit from the shared expertise of all the specialists.

What symptoms does your daughter have that have led to you and her physicians suspecting Ehlers-Danlos syndrome?

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