EDS Specialists
Finding doctors who are knowledgeable in EDS and are willing to find diagnoses and treatments based on the complex and unique symptomology of EDS can be daunting- they're about as common as finding a pot of gold at the end of a rainbow. Many patients even find that they can only get so far down the path of recovery with a certain doctor to find they've reached the end of their knowledge, and they're back to square one in the search. It often takes many months or years to get in to see a doctor who specializes in EDS, but it is worth the effort. Based on years of research, appointments, and experience, here is a list of doctors who top the lists of EDS specialists in the US. Also, here is a list of doctors in the US that specialize in EDS on the Ehlers-Danlos Society webpage, as well. However, it does not include every doctor that is EDS aware- it depends on patients that visit the site to keep the list updated.
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Out of State Physical Therapy
​• Jan Dommerholt, PT, DPT, DAIPM - Owner and Physical Therapist at Bethesda Physiocare in Bethesda, MD
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• Healy Physical Therapy - Several locations in MD, specializes in EDS and its comorbidities
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Out of State EDS Clinics (initial diagnosis, possible treatment options)
• Dr Clair Francomano geneticist at IU Health in Indianapolis, IN (known to diagnose all EDS and help treat)
• Vanderbilt's Autonomic Dysfunction Center in Nashville (known to diagnose all EDS and help treat)
• Lydia Siefert, PAC at Boro Clinic, Murfreesboro, TN (known to diagnose and help treat)
• Center for Multisystem Disease, EDS clinic, Denver, CO
• Dr Amel Karaa at Mass General in Boston, MA
•Dr. Alan Pocinki, MD Internal Medicine in Rockville, MD, specializes in EDS, Dysautonomia and sleep disturbances
• Dr Rachel Li at Sanford Health, Sioux Falls, South Dakota (geneticist known to diagnose hEDS, possibly more?)
• EDS.clinic -hopefully will expand into Nebraska, at some point. This is the doctor who heads it and has EDS.
•Dr Jim Harris, South Bend, IN
Online appointments – possible avenues for diagnosis, depending on insurance coverage, etc.
•Hypermobility Clinic at Tulane University Louisiana
•P.R.I.S.M. Spine and Joint led by Dr Melissa Zingman, Silver Spring, MD (known to diagnose and help treat- out of pocket expenses only but can submit to your insurance post- payment)
•Mount Sinai Nassau, Oceanside, NY
•EDS Clinic at Children’s Mercy in Kansas City
•EDS Clinic at Mayo in Jacksonville, FL
•Specialty Care Clinic at Children’s Hospital in CO
•EDS Clinic at the NY Institute of Technology
•The Center for Complex Neurology, EDS, & POTS led by Dr David Saperstein in Phoenix, Arizona
• Dr Fran Kendall, EDS and Mitochondrial Disease/Dysfunction expert, does remote telehealth at VMP Genetics, sees patients in Roswell, GA, uses GeneDx for genetic testing which has a financial aid program for U.S. patients
• Dr Miguel Trevino, cash only remote telehealth (diagnose and treat EDS, POTS and MCAS) in Clearwater, FL
• Dr Paldeep Atwal at Atwal Clinic, remote telehealth in West Palm Beach, FL
Out of State Pediatrics
• Dr Jordan Jones, Rheumatologist at Children’s Mercy in Kansas City
Out of State Gastroenterology/ Hepatology
• Dr Zachary Spiritos, MD at UNC Health in Chapel Hill, NC
Also affiliated with EVER BETTER MEDICINE, which treats via telehealth for patients in NC and IL, and may be expanding- out-of-pocket only, but you may submit to your insurance as out-of-network
Out of State Allergy/Immunology for EDS with Mast Cell Issues:
• Dr Ann Maitland at Comprehensive Allergy and Asthma in Harrison, NY
Out of State Urology: (Tests for neurogenic bladder when looking for Tethered Cord)
• Dr Jonah Murdock at MidAtlantic Neurology Associates in Greenbelt, MD
Out of State Rheumatology:
• Dr Adam Brown at Cleveland Clinic in Cleveland, OH (known to diagnose EDS)
Out of State Neuromuscular Medicine:
• Dr Robert Wilson at Cleveland Clinic in Cleveland, OH (known to diagnose POTS)
Out of State Neurosurgery: (for critical EDS brain and spinal care, such as Tethered Cord Syndrome, Chiari Malformation, and Cervicocranial Syndrome, etc):
NOTE: There are many options for out of state neuro- be sure to check their insurance options, referral requirements, and prior test requirements. Join FB groups to find more, such as ADULT TETHERED CORD SYNDROME, Tethered Cord Support Group, Ehlers-Danlos Syndrome and Occult Tethered Cord, Beyond the Measurement *Chiari, EDS, Chiari w/EDS* Support Group, etc.
• Dr Paolo Bolognese at Mount Sinai Nassau in Oceanside, NY
• Dr Petra Klinge at RI Hospital/ Brown University in Providence, RI (does pediatrics too)
• Dr Konstantina Svokos at RI Hospital/ Brown University in Providence, RI (w/Dr Klinge, does peds too)
• Dr Patricia Sullivan at RI Hospital/ Brown University in Providence, RI (w/Dr Klinge)
• Dr Sunil Patel at Medical University of South Carolina in Mount Pleasant and North Charleston, SC
• Dr Fraser Henderson and Dr Rosenbaum at the Metropolitan Neurosurgery Group in Upper Marlboro, MD
• Dr Jeffrey Greenfield at Weill Cornell Medicine in Scarsdale and New York, NY (does pediatrics too)
• Dr Ali Baaj at Banner Health/University of Arizona in Phoenix, AZ (worked with Dr Greenfield)
• Dr Kenneth Liu (neuroendovascular surgeon) at Bronson Healthcare in Kalamazoo, MI
• Dr Wouter Schievink at Cedars Sinai Medical Center in Los Angeles, CA
• Dr Justin Virojanapa at University of Cincinnati in OH
• Dr Langston Holly under Dr Ulrich Batzdorf at UCLA in CA
• Dr Faheem Sandhu at MedStar Health in MD
Out of State Lipedema Consults/ Diagnosis/ Treatment:
• Total Lipedema Care Beverly Hills, CA (was founded by Dr Karen Herbst lipedema/EDS expert)
Out of State Autonomic Dysfunction Specialists:
• Dr Erik Amitano at Complex Autonomic Center in WA
• Dr James “Huck” Muldowney at Vanderbilt Autonomic Dysfunction Center in Nashville, TN
Out of State Pelvic Vascular Specialists/ Interventional Radiologists:
• Dr Brooke Spencer, Dr Meredith McDermott, Dr Gulabani at MIPS in Highlands Ranch, CO
Out of State Genetics:
• Sanford Imagenetics in Sioux Falls, SD (known to diagnose EDS, currently 2 year wait list)