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Help finding medical doctor & care for my daughter with hEDS
We have been so frustrated with finding a care provider for our daughter with hEDS. Yes we can find physical therapists or telehealth resources but not a medical physician with MD credentials who can act as main contact as well as make referrals. My understanding is that Mayo at Rochester only takes patients with vascular EDS. The Florida Mayo location sounds like an option but the distance makes it difficult. Any help would be appreciated.
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The most important issues for hEDS are cardiology and optical conditions. You can call The Marfan Foundation and talk to an N.P. for a cardiology doctor in your area, who will do the tests for aortic and heart valve disorders. Any Opthamologist can do the eye exam, looking for the hEDS eye conditions. The University of Virginia Health EDS and Hypermobility Disorders Center is now opened in Charlottesville VA. Services right now are designed for patients within a few hours of Charlottesville, but their website is ruvaedscenter@uvahealth.org. 434-243-8200. They might have some suggestions how to go about getting help. I am going to try to avail myself of their services, as I have with the Marfan Foundation. They are the ones who interceded and got me an appointment with the cardiologist who sees EDS patients and found that I have tricuspid valve regurgitation. There are two physical therapy books available that deal with therapy for hEDS people. I have not found any therapists who specifically deal with this condition, but I think you could find a therapist who would be willing to help with the books' exercises.
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2 ReactionsI Googled books for people with hEDS. There are some new informative ones now. ehlers-danlos.com. has a list of doctors in the U.S. Other important complications of hEDS are Arnold Chiari Malformation, Mast Cell Activation Syndrome, POTS, dental problems, hiatal hernia, bladder and uterine prolapse. It is up to the hEDS patient to know about these possibilities and bring them up to their PCP.
Because of the numerous modalities that are needed to treat the disease processes associated with hEDS you should only consider large teaching hospitals for help. This is where you’ll find a close proximity of medial providers in one location.