Ehlers-Danlos syndrome, Classic type (type I)


How do I find a center of excellence in Ehlers-Danlos syndrome?

The best way to obtain the most accurate, current, clear, and comprehensive information on Ehlers-Danlos syndrome (EDS) is to be seen at a connective tissue clinic or hereditary disorders of connective tissue programs at certain hospitals or medical centers. One of the best ways to find a treatment center or physician with experience in treating EDS is to contact a support group. Supports groups for EDS include the Ehlers-Danlos Society, Ehlers-Danlos Support UK, and the Ehlers-Danlos Syndrome Network C.A.R.E.S. Foundation.

In 2014, the Ehlers-Danlos Society and the Greater Baltimore Medical Center (GBMC) partnered together to establish the EDS Center for Research & Clinical Care at GBMC's Harvey Institute for Human Genetics. This center provides comprehensive clinical care for patients, educational resources for physicians so they can learn about EDS and cutting-edge research into EDS, including exploring new treatments.

  • Ehlers-Danlos Society website.
  • Ehlers-Danlos Support UK website.
  • Ehlers-Danlos Syndrome Network C.A.R.E.S. Foundation website.
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What specialist doctors should I see with Ehlers-Danlos syndrome?

What specialist doctors should I see with Ehlers-Danlos syndrome?

People with Ehlers-Danlos syndrome (EDS) require periodic checkups or exams to monitor their health. They will be checked to see how well treatment is working, whether the disease has progressed or gotten better, or they will be checked for the possible development of new symptoms.

Rare diseases that affect multiple organ systems can benefit from a multidisciplinary approach. This approach involves healthcare professionals with specialized skills and expertise. They work together to make treatment recommendations and to provide quality care of individuals and families. Depending upon the specific symptoms in an individual multidisciplinary team may require a specialist for managing fragile and damage skin (dermatologist); specialists who treat and monitor connective tissue disorders (rheumatologists); a specialist who can monitor and treatment problems of the muscles, joints, and skeleton (orthopedist); a heart and blood vessel specialist (cardiologist) who will monitor and treat the cardiovascular system; an eye doctor (ophthalmologist) who can periodically check for cataracts; a psychiatrist to monitor and treat emotional or behavior problems; a genetic counselor who can help people understand the disease and the implications for the person and other family members, a metabolic disease specialist, a specialist in digestive disorders (gastroenterologist), physiotherapists, occupational therapists, and nutritionists.

  • Ehlers-Danlos syndrome. The National Organization for Rare Disorders website. Accessed July 10, 2016.

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