Physician Registry

Choosing a doctor is a bit like trying on shoes; a perfect fit may be different for each individual. The following list has been compiled by pain patients who have had positive experiences with these physicians.

Hello! Welcome to the 2020 Doctor List. This list was the joint effort of a few zebras (that is, those with rare diseases such as CRPS and EDS) done in their spare time, so forgive any mistakes made. The information listed here is only as accurate as the people who shared with us at one time, so please let us know if a doctor retired or if you have a more current recommendation. Some doctors may only see kids, others may only see adults, so feel free to call yourself or ask in a local FB group to find more good options. There are wonderful state groups for EDS or CRPS or POTS that can be wonderful resources, or else you can email us at cheryl@tcapp.org. Also, if you see a doctor at a teaching hospital, you may need to see a resident first or be referred to another doctor. Try to go with specific recommendations mentioned and ask in your local state FB groups about specific doc personalities/likes so you can be best prepared for your appointment. Find more state docs on “Top Docs” lists or at www.ehlers-danlos.com under “MEDICAL PROFESSIONALS DIRECTORY” or at www.dysautonomiainternational.org under “Medical Board” or “Interactive Global Dysautonomia Map” or info from NORD (National Organization of Rare Diseases). Look at ratings and see from state medical boards if any issues/lawsuits that concern you. There may also be international groups or resources, like the Ehlers-Danlos in the UK. If you have a physician that you would like to share information about, please email us at info@tcapp.org. TCAPP does not endorse these doctors.



Alaska

Nichelle C. Renk
Board-Certified and Fellowship-Trained Interventional Pain Physician
Alpenglow Pain and Wellness
Phone: 907-677-7246
Email: alpenglowpainak@gmail.com

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Arizona

Elissa Gartenberg, DO
Family Medicine/Acupuncture
Scottsdale, AZ
Phone: 602-363-1631
www.modernfamilymedicine.com

David Saperstein
Center of Complex Neurology, EDS & POTS
Phoenix, AZ
Phone: 602-900-9404
www.complexneurology.com

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Arkansas

Thomas Lowder, PhD
Pulmonary Function, Immunology, Muscle Physiology
Conway, AR
Phone: 907-677-7246
Email: alpenglowpainak@gmail.com

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California

Thomas Ahern M.D.
Cardiovascular Disease, Clinical Cardiac Electrophysiology
Scripps Clinic Torrey Pines
Familiar with Dysautonomia and POTS, treats age 14 and up
Phone: 858-554-5039/760-753-5594
Thomas Hofstra, MD
Hematology/Oncology
Familiar with EDS and rare bleeding/clotting disorders
Children’s Hospital Los Angeles
Phone: 323-361-5507
Fax: 323-361-7128
Aaron Banks, MD
Pediatric Cardiologist, Pediatric Heart Center
Familiar with POTS and Dysautonomia
Phone: 661-664-0808/661-449-1654
Deborah Krakow, MD
Physician and research scientist/International Skeletal Dysplasia Registry
Cedars-Sinai
Julie Bergman, PT
Familiar with EDS and RSD
Southern California Aquatic and Land therapy phone: (714) 375-1755
VISIT WEBSITE
Elliot J. Krane, MD
Dept. of Anesthesia & Pain Management
Lucile Packard Children’s Hospital
Phone: (650) 723-5728
VISIT WEBSITE
Emily Block, OT
Irvine, CA
Phone: 949-727-3315
Kenneth Liu
Neurosurgeon at USC Keck School of Medicine
Los Angeles, CA
Good with EDS stent procedures
Email: kenneth.c.liu.md@gmail.com
Nancy Block, PT
Founder of  Ehlers-Danlos Group of Silicone Valley
Northern CA
Phone: 408-257-2225
Andrew J. Maxwell
Pediatric Cardiologist
Pleasanton, CA
Phone: 925-416-0100
Brianna Cardenas, MS, PA-C, ATC
Pain management, EDS, Spinal CSF leak, Dysautonomia, CCI
Upland, CA
Phone: 909-703-3977
Email: healeddandempowered@gmail.com
VISIT WEBSITE
Inderpal Randhawa MD
Board certified in adult and pediatrics, and certifications in Clinical Immunology, Allergy and Pulmonary Medicine
Phone: (562) 933-8567
Anthony Chang, MD., MBA, MPH
Division Chief of CHOC Children’s Specialists Cardiology
Familiar with POTS and Dysautonomia
Phone: (714) 509-3939
Fax: (714) 509-3949
Dr. Nicholas Riegels
Kaiser Permanente
Knowledgeable about RSD/CRPS
Oakland. CA, 94611
Phone: 510-655-4000/510-752-1000
Julie Griffith, M.D.
Pediatric Neurologist
Phone: (415) 925-1616
VISIT WEBSITE
Wouter Schievink
Neurosurgery, CSF Leaks
Los Angeles, CA
Cedars-Sinai/Stanford
Phone: 800-233-2771
Dennis Hart, M.D.
Pediatric and Adult Pain Management Specialist
1625 Stockton Blvd, Suite 104
Sacramento, CA 95816
Familiar with many conditions of the spine, nerves and GI tract.
Phone: (916) 454-6667
Stanford Pediatric Pain Program
Mary L. Johnson Pediatric Ambulatory Care Center
Pediatric Pain Management Clinic, Inpatient and Outpatient
Phone: (650) 497-8977
Fax: (650) 724-5344
Kristin Herman
Medical Genetics, Pediatrics
UC Davis
Phone: 800-282-3284
Neda Zadeh M.D.
Medical geneticist in the Division of Medical Genetics at CHOC Children’s Hospital, and the Associate Director of the Molecular Diagnostic Laboratory at Genetics Center.
Phone: (714) 288-3500
Fax: (714) 288-3510

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Colorado

Paul Battle, PA
Works with Dr. Chopra for Low-Dose Naltrexone
Phone: 720-557-9363
Dr. Hopp, PT
Littleton Clinic
Understands MTHR/Detox and EDS Pain
Phone: 720-351-2411
Belmar Pharmacy
Compounding Pharmacy for IDN/Will Mail
251 Violet Street, Sweet 140
Golden, CO 80401
Phone: 303-763-5533
www.BelmarPharmacy.com
Ian Kaminsky
Neurosurgeon
Englewood, CO
Samuel Brescia, MD
Pediatric Cardiologist
Familiar with Dysautonomia and Complex POTS
Denver, Colorado
Phone: 303-860-9933
VISIT WEBSITE
Jeffrey Kesten
Alpine Health and Wellness
Knows CRPS, Ketamine Infusions
Phone: 720-519-0678
Colorado Center for Physical Therapy
CRPS and EDS-Aware PT
Phone: 303-797-0988
Dr. Melamed
Immunology/Knows MCAS
Phone: 303-773-9000
Dr. DeZoten
GI Specialist
Children’s Hospital of Denver
Phone: 720-777-6669
Dr. Michaele Posey
Certified Functional Neurologist
3230 E. Woodman Rd., Suite 110
Colorado Springs, CO 80920
Phone: 214-543-4744
Dr. Hepworth
ENT, CSF Leaks
Phone: 303-224-4711
Jill Schofield
Center for Multisystem Disease
Autoimmune Disease and Dysautonomia, IVIG
Denver, CO
Phone: 303-366-6633
www.centerformultisystemdisease.com
Bob Holtby, PT
Physical Therapist
1831 Austin Bluffs Parkway; Suite 100
Colorado Springs, CO 80918
Phone: (719)599-8550 Fax: (719)218-9200
VISIT WEBSITE
Summit Headache and Neurologic Institute
Phone: 720-336-4300
Dr. Hollister
Rheumatologist
Children’s Hospital of Denver
Phone: 720-777-6132

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Connecticut

Raul Arguella
Pediatric Endocrinology
Derek Lee
PCP, Trigger Points
Middlesex Primary/Family Medicine Residency
Middletown, CT
Takes Husky
Phone: 860-358-6418
Carol Papov & Claudia Baxter
Obstetrics and Gynecology
Women’s Healthcare of New Milford
New Milford & Torrington, CT
Robert Levin
Rheumatology
Eastern CT Rheumatology
East Lyme, CT
Mixed Reviews
Danielle M. Bellows
Pediatric Physical Therapy
CCMC
Farmington, CT
Kenneth Laro
Dentistry
Manchester, CT
Jaclyn Beirne
Geneticist
UConn Health
Farmington, CT
Phone: 860-679-1440
Anthony Maietta
Manual Physical Therapy
Zen Body + Mind
West Hartford, CT
Phone: 860-648-0659
Lesley Bennett
Volunteer State Ambassador for NORD
CT Rare Action Network
Stamford, CT
Email: lesleybennett@rareaction.org
Phone: 203-829-7650
Arya Mani
Cardiovascular Genetics
Yale Cardiology or Yale Nuclear Cardiology
New Haven, CT
Alex Bibikau
MMJ Certification
REN Health
Milford, CT
Charlotte Massie
Bauerfeind Representative, Bracing
West Hartford, CT (can travel)
Email: charmassie@yahoo.com
Alan Braverman
Gastroenterology
Milford, CT
Yuriy May
Dentistry
Farmington, CT
Brian Cambi
Cardiology, Interventional Cardiology, POTS
Yale Cardiology
New London & Branford, CT
Peter McAllister
Neurology, Headaches
New England Institute for Neurology and Headache
Stamford, CT
Phone: 203-914-1900
Vincent Carlesi
Pain Management, Medical Marijuana
Pain Management Associates of Connecticut
Ridgefield & Stamford, CT
Phone: 203-325-5700
Anne McLaughlin
Pulmonology
CCMC
Farmington & Hartford, CT
Elise Carlson
Rheumatology
New Haven Rheumatology
Milford & New Haven, CT
Nestor Mejias
Chiropractic
Chiropractic Specialties of CT
New Milford, CT
David M. Casey
Cardiology, POTS
Starling Physicians
Farmington & Glastonbury, CT
Vincent Michael
Dentistry
Guilford, CT
Saira Cherian
Osteopathic Manual Work
UConn Health
Farmington, CT
Gretchen Michaelson
Neurology, Headaches, & Migraines
Headache Care Center
South Windsor, CT
Phone: 860-263-3603
Gordon Childs
Bracing (CPO & OTR)
Hanger Clinic
Torrington, CT
Tom Moorcroft
DO, Lyme Disease
Origins of Health
Berlin, CT
Collaborative Natural Health
Dr. Zachau and Amy Smith-Bassett prescribe IDN
May be those there that do osteopathic manipulation therapy
Manchester & West Hartford, CT
Michelle Habib & Travis Moran
Manual Physical Therapy
Crossroads Physical Therapy
Spiritual needs facility, may be “anti” certain medicines
Columbia, CT
Felice Colliton
Obstetrics and Gynecology
Woodland Women’s Health Associates
Hartford, Avon, & Glastonbury, CT
Frederick Nahm
Neurology
Neurocare Health PC
Greenwich, CT
CT Asthma and Allergy
Allergy, Immunology, Hematology
PA Olivia Dellostritto, Hillary Trujillo-Hernandez pediatrics, Gavin Schwartz adults
West Hartford & Avon, CT
Perry Peretz
Pain Management, Osteopathy
Advanced Pain Solutions
West Redding, CT
Misty Doering
Neurology
Integrated Neurology of Connecticut
Ashford, CT
Timothy Quan
Rheumatology
Rheumatology Specialists of CT
Phone: 860-432-8200
Michelle Gallerani
Physical Therapy, RSD/CRPS
Physical Therapy & Sports Medicine Centers
New London, CT
VISIT WEBSITE
Laura Renfro
Therapy
Familiar with CPRS
West Hartford, CT
Shanna Gannon
Urology
Hartford Healthcare Medical Group
West Hartford and Plainville, CT
Brian Riordan
Physical Medicine
Physical Medicine/WCMG
Southbury and Danbury, CT
Robert Gatehouse
Dentistry & Pediatric Dentistry
Central Connecticut Pediatric Dentistry & Orthodontics
Middletown & Old Saybrook, CT
Melissa Rockwell
Cranio-Sacral Therapy, Massage
Bending Bridges Healing Therapies
North Stonington, CT
Group Member of CT Zebras
Alan Greenwald
Gastroenterology
Yale University
New Haven, CT
Ashley Russell
Naturopathy, Acupuncture, Massage
Ashokan Natural Medicine
May be able to do exome testing/bloodwork
New Milford, CT
Phone: 203-794-6331
Marilyn Gross
Pelvic Physical Therapy
Physical Rehabilitation Center
Middletown, CT
Phone: 860-358-2700
Christopher Pickett, Heiko Schmitt, & Jason Ryan
Cardiology, Heart Rhythm Disorders
Pat and Jim Calhoun Cardiology Center
Farmington, CT
Phone: 203-829-7650
J. Nathan Hagstrom
Hematology, Oncology, Pediatrics
CCMC
Hartford, CT
Mayra Sanchez
Gastroenterology
Hanger Orthotics
Orthotics and Bracing
Laurie Silverman
Therapy (LCSW)
Psychological Health Associates
West Hartford, CT
Margo Hennebach
Feldenkrais, Alexander Method
Sound Moves
Bloomfield, CT
Jan Smith
Manual Physical Therapy
Physical Therapy Services of Connecticut
Branford, CT
Harini Hosain
Allergy, Immunology
Bloomfield, CT
Phone: 860-286-0041
Eloise Stager
Cranio-Sacral Therapy, EDS
CT Center for Cranio-Sacral Therapy
Founder of CT Zebras Facebook Group, Has EDS Herself
New Milford, CT
Email: ctcranio@gmail.com
Phone: 860-3672926
Website: www.ctcranio.com
Richard Hsu
MALS, Endovascular Surgery
Danbury, CT
Joel Goodman & Tamara Stein
Dentistry
Goodman & Stein
West Hartford, CT
Corey Jaquez
Pain Management, MMJ
West Hartford, CT
Phone: 860-218-1725
Ted Strayer
DO, Physiatry
Hamden, CT
Marlaine Jean-Miller
Obstetrics & Gynecology
Women’s Health Connecticut
Rocky Hill, Farmington, Hartford, & Glastonbury, CT
Beatriz Tendler
Cardio-Endocrinology, POTS, Hypertension, & Vasular Diseases
UConn Health
Farmington, CT
Phone: 860-679-3343
Maria Johnson
Gastroenterology
Connecticut GI
Farmington & Meridan, CT
Phone: 203-626-6540
Paul Tortland
Pain Management, Regenerative Medicine, PRP/Stem Cell
Valley Sports Physicians and Orthopedic Medicine
Glastonbury, CT
Daniel Jones
Psychology
Institute of Living
West Hartford, CT
Taneisha Grant and Renuka Umashanker
Gastroenterology
Fawad Kazi
Cardiology, POTS
Bristol, CT
Shailendra Upadhyay
Cardiology, Congenital Heart Defects
CCMC (Takes adult patients)
Hartford, CT
Anita Kohli
Neuro-Opthamology
Yale University
Purvi Shah Vanderploeg
Therapy (Psychologist)
West Hartford, CT
Jonathan Kost
Pain Management
Hartford Hospital Pain Management Treatment Center
West Hartford, CT
Dina Weis
Psychology, Pediatric Psychology
300 Plaza Middlesex
Middletown, CT
Yanina Kostina
Neuro-Opthamology
The Eye Care Group
Orange, Waterbury, and Southbury, CT
Phone: 203-789-2020
John Williams
Family Medicine
Middlesex Healthy Family Medicine
Middletown, CT
Pamela Kurth
Child Psychiatry
Psychological Health Associates
West Hartford, CT
Katherine Williams and Others at HSC
Occupational Hand Therapy, Silver Ring Splints
Hospital for Special Care
New Britain, CT
Daniela Lares
Adult Psychiatry
West Hartford, CT
Phone: 860-216-9760
Cindi Witrock
Physical Therapy, Manual Physical Therapy
Carlson Therapy Network
New Milford, CT
Emily Learner
Cranio-Sacral Therapy
Wellspring Therapies
New London, CT
William Yorns Jr.
Neurology, DO
Danbury, Waterbury, & New Milford, CT
Tricia LeDuc
Physical Therapy, Assistive Devices
Hospital for Special Care
New Britain, CT
Group Member of CT Zebras
Works with Kerry Sheltra (860-250-5476) of NuMotion for All Wheelchair Needs
Phone: 860-832-6258
UConn
Genome Testing

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DC

Babak Arvanaghi
Anesthesiology, Pain Management
Capitol Surgical Center and Metropolitan Medical Center
Bethesda, DC
Phone: 301-530-7303/202-775-7246
Perry Richardson
Neurology
George Washington University
Neuromuscular disease, post-herpetic neuralgia/subcutaneous botox, botox for migraines
Phone: 240-477-5650
Anil Darbari
Pediatric Endocrinology, Motility
Children’s National Medical Center
Phone: 202-476-5000
Joel Rosenberg
Consultive/Preventative Cardiology, Mind-Body Medicine
Cardiology Associates
Prescribes sleep medicine
Phone: 202-822-9356
Jeffrey Haggquist, DO
Pain Recovery, Rehab, PT, Massage
QuistMD The Flexibility, Sports, and Rehab Clinic
Phone: 202-244-8222
Reem Saadeh-Haddad
Pediatric and Adult Geneticist
Phone: 202-422-2000
Rhianni Hertzfeld
Neurology
Neurology Center
Phone: 301-562-7200
Faheem Sandhu
Neurosurgery
Georgetown Medstar University Hospital
3800 Reservoir Rd NW, 7th floor
Washington, DC
Familiar with TC and CCI, trained under Dr. Henderson
Phone: 301-856-2323
Fax: 301-856-0477
Craig Martin Kessler
Hematology (Helpful for EDS)
Medstar Health
Phone: 202-444-2198
Susmeeta Sharma
Director of Pituitary Endocrinology
Medstar Pituitary Center
Washington, DC
Phone: 855-218-0446
Jessica Korman
Gastroenterology
Capital Digestive Care and Metropolitan Gastroenterology Group
Bethesda and DC
Phone: <240-737-0085
Marc Shlosberg
Sleep Management, Headache Management, Epilepsy/em>
Medstar NRH and Washington Hospital Center
Phone: 202-877-5119
Jeffrey Moak
Pediatric Cardiology
Phone: 202-476-2090
Michael Sirdosky
Neurology/em>
Georgetown University Hospital
Phone: 202-444-8525
LeeAnn Rhodes
Pain Management/em>
WHC
Phone: 202-877-3442
Monvadi Srichai-Parsia
Cardiology/em>
Medstar
Phone: 202-444-5111

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Delaware

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Florida

Paldeep Atwal
Genetics
May do telehealth
Email: DrA@AtwalClinic.com
Phone: 904-364-9985
www.AtwalClinic.Com
Sami Nallahmshetty
Immunology, MCAS, and Mastocytosis
Florida Medical Clinic
Phone: 813-388-6855
Orlando Florette
Pain Management, CRPS
Jacksonville, FL
Phone: 904-448-2005
Marcia Perretto
PT, DPT, COMT
Actify PT
Boca Raton, FL
Phone: 561-366-2435
drperreto on Instagram
www.actifypt.com
Eric Gabriel
Neurosurgery
Jacksonville, FL
Phone: 904-308-2006
Shaista Syeda Safder
Pediatric Gastroenterology, Gastroparesis
Orlando Health and Arnold Palmer Hospital
Phone: 321-841-3338
Ashraf Hanna
Ketamine Treatments for CRPS/Pain
Florida Spine Institute
2250 Drew Street
Clearwater, FL
Phone: 727-797-7463
Frederick Stahlman
Cranio-Sacral Therapist
Palm Beach Gardens
Email: fstahlman@yahoo.com
Phone: 239-398-3154
www.theupledgerinstituteclinic.com
Steven Iskowitz
Pediatric Cardiology
Familiar with POTS and Dysautonomia
Phone: 954-972-1600
Roman Yusupov
Pediatric Geneticist
Familiar with EDS

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Georgia

Fran Kendall and Mark Korson
Genetics, Mitochondrial and Metabolic Diseases
VMP Genetics
Atlanta, GA
Email: info@vmpgenetics.com
Phone: 404-793-7800
www.vmpgenetics.com
Luther Rollins
CRPS, Blocks, Ketamine Infusions
Southeastern Interventional Pain Associates
Atlanta, GA
Phone: 770-558-8501

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Illinois

Dr. Rose Batanjski
Chiropractor
Warren, IL
Phone: (586) 576-0701
Dr. Bradley Tinkle
Geneticist
Park Ridge, IL
Phone: (847) 723-7705

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Indiana

Heidi Collins
Physiatrist
South Bend, IN
Phone: 360-647-8358/574-256-9032
Brad Tinkle
Pediatric Geneticist, EDS Expert
St. Vincent Hospital
Indianapolis, IN
Phone: 317-338-5288
Clair Francomano
Genetics, EDS Expert
Indiana University/IUHP
Phone: 317-944-3966
Fax: 317-968-1354
Email: IUHPGenetics@iuhealth.org
James Tolley
Riley Hospital, Pediatric Pain Clinic
705 Riley Hospital Drive, Indianapolis, IN 46202
Phone: (317) 944-5000
Erin Fox
RN Case Manager, Medical and Molecular Genetics
Indiana University/IUHP
Indianapolis, IN
Fax: 317-968-1354
Email: IUHPGenetics@iuhealth.org
Laurence Walsh
IUHP Medical & Molecular Genetics
975 west Walnut Street IB-130 Indianapolis IN 46202
Phone: 317-948-7450
Fax: 317-274-2387
James Harris
Allergist
Dr Michael Yergler
Geneticist
South Bend, Indiana
Phone: (574) 247-9441
Katelyn Hodge
Genetic Counseling
Phone: 317-274-2388/317-274-3901

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Maine

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Maryland

Michael April, DO
Medical Management of Pain, Musculoskeletal
Rockville, MD
Phone: 301-770-6301
Marvin Kanovsky
Nuclear Cardiology
Chevy Chase, MD
Phone: 301-656-5050
Maria Arini, PT, DPT
Manual Therapy, MFR, Cold Laser Therapy, Dry Needling, CRPS, EDS
Bethesda Physiocare
4405 East West Highway Ste 403
Bethesda, MD
Phone: 301-656-5613
Michael Keleman
Cardiology
Johns Hopkins
Columbia, MD
Phone: 443-997-0270
Babak Arvanaghi
Anesthesiology and Pain Management
Capitol Surgical Center and Metropolitan Medical Center DC
Bethesda, MD
Phone: 301-530-7303/202-775-7246
Ramesh Khurana
Neurology/POTS
Headache Management Center
Columbia, MD
Phone: 410-997-3113
James Black
Vascular Surgery
Johns Hopkins
Baltimore, MD
Phone: 410-955-5165
Antonie Kline
Pediatric Genetics
GBMC
Baltimore, MD
Phone: 443-849-3131
Joan Blomquist
Urogynecology
GBMC
Towson, MD
Phone: 443-849-2767
Myles Koby
Radiology (CCI readings)
Diagnostic Imaging Associates (Doctor’s Community Hospital)
Lanham, MD
Phone: 301-459-7990
JR Bucklin, PT
Physical Therapy
Cornerstone Physical Therapy
Frederick, MD
Email: info@cornerstonept.net
Phone: 443-849-3131
www.cornerstonept.net
Christina Georgia Kokorelis
Physical Med and Rehabilitation
Johns Hopkins
Concussion, EDS, Dysautonomia
Phone: 443-997-6754 (MD), 410-464-6641 (outside MD)
Hopkinsmedicine.org
Ali Bydin
Neurosurgery
Johns Hopkins
Familiar with TOS
Jessica Korman
Gastroenterology
Capital Digestive Care and Metropolitan Gastroenterology Group
Bethesda, MD, and DC
Phone: 240-737-0085
Paul Christo
Pain Management
Johns Hopkins
Howard Levy
Primary Care, Familiar with EDS
Johns Hopkins
Baltimore, MD
Phone: 410-583-2774
Tameta Clark
Chronic Pain Management, Musculoskeletal
Rockville, MD
Phone: 301-770-6301
Mark Luciano
Neurosurgery
Johns Hopkins Hospital and Bayview Medical Center
CSF disorders and leaks, hydrocephalus, chiari
Phone: 410-955-7482
Lee Dellon
Dellon Institutes for Peripheral Nerve Surgery
Phone: 1-877-335-5661
Richard Marvel
Gynecology
Center for Pelvic Pain
Annapolis, MD
Phone: 410-573-1436
Hal Dietz
Pediatrics and Genetics
Johns Hopkins
Baltimore, MD
Phone: 410-614-0701
Sylvan Mintz
Dentistry
Sleep Apnea, TMJ
Bethesda, MD
Phone: 301-530-8570
Jan Dommerholt
Physical Therapy
Bethesda Physiocare and PhysioFitness
Bethesda and Rockville, MD
Phone: 301-656-5613
Kendra Nielson Michaels
EDS Wellness
Bethesda, MD
Phone: 240-687-7791
www.edswellness.org
Jefferson James Doyle
Opthamology
Genetic eye disease and pediatric opthamology
Narjal Nikhar
Neurology
Bethesda and Olney, MD
Phone: 301-260-7600
John Droter
Dentistry
Facial Pain, TMJ, Bowie
Phone: 301-805-9400
Christopher Oakley
Neurology, Headaches, POTS
Johns Hopkins
Baltimore and Annapolis, MD
Phone: 410-955-4259
Scott Elkind
Attorney (Social Sector, Disability)
Silver Spring, MD
Phone: 301-495-6665
Alan Pocinki
Privia Health
Rockville, MD
Phone: 301-762-6777
Esther “Stella” Emsellem
Osteopathic Manipulation and Manual PT
Chevy Chase, MD
Phone: 240-743-4287
Shushila Rajasingham
Pediatric Neurology
Bethesda Child Neurology
Gaithersburg, MD
Phone: 240-477-5650
Stacy Fisher
Cardiology
Owing Mills, MD
Phone: 410-654-0400
Margarita Raygada
Eunice Kennedy Shriver National Institute of Child Health and Human Development
Bethesda, MD
Phone: 301-451-8822
Clair Francomano
Genetics, EDS Expert
Indiana University/IUHP
Phone: 317-944-3966
Fax: 317-968-1354
Email: IUHPGenetics@iuhealth.org
Peter Rowe
Johns Hopkins and Children’s Center Chronic Fatigue Clinic
Familiar with POTS
Phone: 401-955-9229 (MD), 401-464-6641 (outside MD)
www.hopkinsmedicine.or
Rachel Gafni
Pediatric Endocrinology
NIH
Mark Scarupa
Allergist
Institute for Asthma and Allergy
Silver Spring, MD
Phone: 301-962-5800
Albert Galdi
Neurology and Pain Management
Neurology Center
Botox for migraines, neuropathic pain managed without opiates
Potomac, MD
Phone: 301-562-7200
Eric Singman
Neuro-opthamology
Wilmer General Eye Services at Johns Hopkins
IH/Pseudotumor Cerebri
Baltimore, MD
Email: esingma1@jhmi.edu
Phone: 410-955-5080<
www.hopkinsmedicine.org/profiles/results/directory/profile/3740277/eric-singman
Talal Ghazal
Anesthesiology and Pain Management
Silver Spring, MD
Phone: 301-933-8840
Mark Klaiman and Jose Soros
Neurology
Point Performance
Physical med and rehab, dry needling, acupunture, trigger point injections
Bethesda, MD
Phone: 301-493-8884
Ozlem Goker-Alpam
Pediatric Genetics
Bethesda, MD
Phone: 301-451-0900
Elizabeth Tello, Esq.
Education Lawyer/Advocate
Can help with school IEP and 504
Frederick, MD
Phone: 301-825-9010
Fraser Henderson, MD
Neurosurgery, Board Certified
Familiar with chiari and occult tethered cord
Phone: 301-654-9390
Jaskiran Vidwan
Neurology
Neurology Center
Headache botox and facial pain
Potomac, MD
Phone: 301-562-7200
Judy Huan
Cerebrovascular Neurosurgery
Johns Hopkins
Aneurysms and Arterial Venous Malformation
Baltimore, MD
Phone: 410-502-5767
Edward Zebovitz
Dentistry
Oral surgery, Bowie
Phone: 301-352-6311
John Huffman
Anesthesiology and Pain Management
Familiar with chiari and occult tethered cord
Phone: 301-654-9390
Alissa Zingman
Prism Spine and Joint
Silver Spring, MD
Phone: 240-600-0177
Cheryl Iglesia
Urogynecology
Medstar Health
Rockville, MD
Phone: 202-877-6526

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Massachusetts

Sanjay Bansal, M.D.
Pediatric Endocrinologist
Familiar with secondary Vitamin D deficiency, thyroid disorders that may accompany some chronic pain conditions
Phone: 617-636-8100
WEBSITE
Joel Krier
Genetics
Richard Barnum, M.D.
Pediatric Private Psychiatrist
Extremely versed in the effect of chronic pain conditions on the pediatric patient, the families, and the complexities encountered through the medical system
Make sure to say that TCAPP referred you, as he is taking fewer patients
Phone: (617) 469-3911
George P. Lantz, DO
Pain Management Doctor
Phone: 603-629-8020
Jaime Belkind-Gerson, M.D.
Pediatric Gastroenterologist
Phone: 617-726-8705
VISIT WEBSITE
Michael Leeman
Anesthesiology, Pain Management, AMPS
Mass General Hospital
Laura Bevilacqua
Pediatric Cardiology
Boston Children’s Hospital
Phone: 617-355-4278
MA Support Group
Facebook
Stuart Braun, M.D.
Pediatric Orthopedic Surgeon
Familiar with joint instability and conservative measures to stabilize them
VISIT WEBSITE
Mass General Hospital Oral Surgery Department
Some know TMJ
Charles Cassidy
Orthopedics, Hand and Upper Arm, Custom Bracing
Tufts Medical Center, Boston
Familiar with EDS
Phone: 617-636-5150
Jeff Milunsky
Genetics
Center for Human Genetics
Cambridge, MA
Email: jmilunsky@chginc.org
Phone: 617-492-5106
Fax: 617-492-7092
www.chginc.org
Shusmita Dhar
Primary Care Provider
One Medical Government Center
Worcester, MA
Alisa Niksch, M.D.
Pediatric Cardiologist
Extremely versed in dysautonomia, POTS, and other types of syncope that accompany mitochondrial dysfunction, EDS, or RSD/CRPS
VISIT WEBSITE
Dean Donahue
Thoractic Outlet Syndrome
Mass General Hospital
Deepak Rao
Rheumatology
Brigham and Women’s
Kipp Dye, PT
Physical Therapist
Familiar with recognizing and working with RSD/CRPS
VISIT WEBSITE
Ian Rivera
Pain management
Care Dimension
Palliative Care/Hospice
Danvers, MA
888-283-1722
Jon Rodis
MA Support Group Admin, Expert on EDS/Marfan’s Disability Issues
Matthew Gianetti and Marianna Castells
Allergy, Immunology, MCAS, and Mastocytosis
BWH Boston
Phone: 617-732-9850
Fax: 617-525-1310
Sarah Seward
Clinical Psychology
Teens and adults in western Massachusetts
Specializes in mood disorders/anxiety and chronic physical illnesses
Phone: 413-206-2173
EDS Massachusetts/New England Support Group Recommendations of Doctors/Medical
Facebook Group
Joan Stoler
Geneticist for Connective Tissue Disorders
VISIT WEBSITE
Alejandro Flores
Pediatric Gastroenterologist
Familiar with motility disorders such as gastroparesis, abdominal pain that accompany many pediatric pain conditions
VISIT WEBSITE
Mitchell Strominger
Pediatric and Adult Neuro-Opthalmologist
Familiar with Ehlers-Danlos and Mitochondrial Disorders
VISIT WEBSITE
John Gaitanis
Neurology
Tufts Boston
Phone: 617-636-8100
David Sweetser
Genetics
Mass General Hospital
Phone: 617-726-1561
Matthew Hamilton
Gastroenterology
Mass General Hospital
Phone: 617-726-1561
Jordan Tishler
Cannabis Specialist
inhaleMD
Brookline and Cambridge, MA
Phone: 617-861-8519
Jodi Hoffman, M.D.
Pediatric and Adult Connective Tissue Geneticist
Familiar with Connective Tissue Disorders
Phone: 617-414-4841
VISIT WEBSITE
Nicole Ullrich
Neurology
Boston Children’s Hospital
Anna Hohler
Neurology, Good POTS Diagnostician
St. Elizabeth’s Medical Center
Brighton, MA
Phone: 617-789-3000
Lynn Wachs, M.D.
Pediatrician
Familiar with helping to manage as a pediatrician chronic pain cases.
Phone: (781) 487-4340
Michael Holick
Endocrinology
Boston, MA
Phone: 617-638-7470
Jon Warner
Shoulder Specialist
Steven Hwang, M.D.
Pediatric and Adult Neurosurgeon
Familiar with neurosurgical complications that can accompany Ehlers-Danlos Syndrome such as occult tethered cord, tethered cord, cranial cervical instability and chiari malformation.
VISIT WEBSITE
Harry Webster, M.D.
Pediatric Physiatrist
Familiar with and able to work with gait abnormalities encountered in Ehlers-Danlos Patients and RSD/CRPS.
VISIT WEBSITE
Mohammed Issa
Pain Management, Psychiatry
Brigham Women’s Faulker Hospital
Boston, MA
Phone: 617-983-7080
Michael Willers
Cardiology, Dysautonomia
Holyoke, MA
Phone: 413-315-3117
Kathleen Kane
Attorney
Personal injury, wills, trusts, estates, SSDI, worker’s comp, divorce, bankruptcy, custody
Email: KKaneLaw@comcast.net

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Michigan

Pierre Atallah
Cardiology
Rochester, MI
Phone: (248) 551-3000
Domenic Sica
Dysautonomia
Dr. Basch
Pain Management Specialist
Grand Rapids, MI
Phone: 616-285-1377
Richard Stone, MD
Dermatology
Sterling Heights, MI
Phone: 586-685-3285
Violette Henein, MD
Rheumatology
Clinton Township, MI
Phone: (586) 859-0632
Dr. David Vallance
Rheumatology
Ann Arbor, MI
Phone: (734) 623-0100
Cesar Hidalgo, MD
Neurology
Rochester Hills; MI
Phone: (248) 852-1777
Iris Zink
Lansing, MI
Jagmohan Sharma
Physiatrist (pain management)
Clinton Township, MI
Phone: 586-228-2882

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Minnesota

Anne K. Brutlag
Physical Medicine and Rehabilitation Services
Park Nicollet Clinic
3800 Park Nicolle Blvd
Minneapolis, MN
Phone: 952-993-3800
Fax: 952-993-11392
VISIT WEBSITE
Kathleen Hopkins
Family, Certified Functional Medical Practitioner
Minneapolis, MN
Phone: 612-345-5029
Email: drkathopkins@gmail.com
VISIT WEBSITE
Shanda Dorff
EDS, MCAS, POTS
Complex Cares, LLC
Shoreview, MN
Phone: 651-756-9596
Email: info@ComplexCaresMN.com
VISIT WEBSITE
Anna McConville
Physical Therapy
Replenish Wellbeing
Minneapolis, MN
Phone: 612-394-6658

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Missouri

Sarah Glover
Pediatric GI for HATS and MCAS
Phone: 601-984-4540

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Nebraska

Eric Rush
Genetic Medicine, Munroe-Meyer Institute
985450 Nebraska Medical Center
Omaha, Nebraska
Phone: 402-559-3446

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Nevada

Tim Tollestrup
Surgeon, Nerve Entrapment
Henderson, NV
Phone: 702-666-0463

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New Hampshire

Brian D. Kossak, MD
Pediatric Neurologist
VISIT WEBSITE
Bruce Meyers, MD
Physiatrist
VISIT WEBSITE
John H. Yost, MD
Pediatric Rheumatologist
VISIT WEBSITE

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New York (Upstate)

Dr. Svetlana Blitshteyn
Neurologist Specializing in Dysautonomia
VISIT WEBSITE
Dr. Yellamaraju Kumarl
Internal Medicine, Alden Medical Group
Familiar with EDS
Phone: 716-218-3887
Erik Canavan, PT
Carey & Daley Liverpool, NY
VISIT WEBSITE
Dr. Wayne Leavitt
Pediatrician
Familiar with EDS
Phone: 315-487-1541
Dr. David Kanter
Physical Medicine and Rehabilitation
Familiar with EDS
Syracuse, NY
Phone: 315-464-5820
Julian M. Stewart, MD, PhD
Professor of Pediatrics, Physiology and Medicine; Director of the Center for Hypotension
New York Medical College; Valhalla, NY
VISIT WEBSITE

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North Carolina

Herbert Fuchs, MD, PhD
Division Chief, Pediatric Neurosurgery, Duke Medicine
Familiar with hydrocephalus and Chiari malformations
VISIT WEBSITE

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Ohio

Dr. Sumit Parikh
Pediatric Neurologist interested in Neurodegenerative Disorders and Metabolic Disorders
Cleveland Clinic, Ohio
Phone: 216-444-5559
VISIT WEBSITE
Dr. Anna Mitchell
Geneticist
University Hospitals of Cleveland
Phone: (216) 844-3936

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Rhode Island

Pradeep Chopra, M.D.
Pain Management Specialist
Familiar with EDS/RSD/CRPS and other Chronic Pain Conditions. Primarily serves adults but will see children.
VISIT WEBSITE
Kathleen Muldowney, PT
Physical Therapist
Very familiar with EDS and manual physical therapy for the EDS patient young and old.
VISIT WEBSITE
Michael Healey, PT
Physical Therapist
Specializes in craniosacral therapy, Very Familiar with EDS and RSD/CRPS and other spinal issues.
VISIT WEBSITE

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South Carolina

Dr. Timothy Crunk, PT, DPT, MS, OCS, CFMT, FAAOMPT
Physical Therapist, Crunk Physical Therapy, Greenville
Familiar with recognizing and working with pediatric pain conditions.
Jonathan Markowitz, MD
Pediatric Gastroenterology, Greenville Hospital System
VISIT WEBSITE
Addie Hunnicutt, MD
Pediatric Neurology, Greenville Hospital System
Familiar with chiari
VISIT WEBSITE

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Texas

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Virginia

John Birknes, MD
Pediatric Neurosurgeon
Familiar with EDS
Children’s Hospital of the King’s Daughters, Norfolk
Phone: (757) 668-7990
Joseph Tregaskes, DMD, MS, FACP
Familiar with EDS and TMJ
Richmond.
Phone: 804-282-0510
Jean E. Teasley, M.D.
Pediatric Neurologist
Familiar with Dysautonomia, POTS and Mitochondrial Disorders
Phone: 804-828-9720
Gary W. Tye, M.D.
Pediatric Neurosurgeon
Harold F. Young Neurosurgical Center, Richmond
Phone: (804) 828-9165, Fax: (804) 828-0374

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Wisconsin

Dr. Patrick Cummings
Orthopedic Specialist, Aspen Orthopedics
Familiar with surgical repair of Ehlers-Danlos Ligamentous Injuries in both children and adults
VISIT WEBSITE
John Routes MD
Children’s Hospital of Wisconsin, Milwaukee
Experienced in treating PIDD
Phone: 414-266-6840
Mary Hintermeyer, RN, MSN, CPNP
Children’s Hospital of Wisconsin, Wauwatosa
Experienced in treating PIDD
Phone: 414-266-6293
James Verbsky MD, PhD
Children’s Hospital Of Wisconsin, Wauwatosa
Experienced in treating PIDD
Phone: 414-266-6840

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TCAPP does not endorse these doctors, their names are provided by at least one client suffering from a pediatric pain condition who has had a positive experience; this does not mean that everyone’s experience with that particular doctor has been positive. Keep in mind, choosing doctors is much like trying on shoes… each perfect fit may be different for each individual.

We rely on recommendations from patients. If you have had a positive experience with a physician and feel like they should be on this list, please submit the doctor’s name, specialty, internet link or office telephone number and what they have helped you with.