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
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
Arkansas
Thomas Lowder, PhD
Pulmonary Function, Immunology, Muscle Physiology
Conway, AR
Phone: 907-677-7246
Email: alpenglowpainak@gmail.com
California
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
Hematology/Oncology
Familiar with EDS and rare bleeding/clotting disorders
Children’s Hospital Los Angeles
Phone: 323-361-5507
Fax: 323-361-7128
Pediatric Cardiologist, Pediatric Heart Center
Familiar with POTS and Dysautonomia
Phone: 661-664-0808/661-449-1654
Physician and research scientist/International Skeletal Dysplasia Registry
Cedars-Sinai
Familiar with EDS and RSD
Southern California Aquatic and Land therapy phone: (714) 375-1755
VISIT WEBSITE
Dept. of Anesthesia & Pain Management
Lucile Packard Children’s Hospital
Phone: (650) 723-5728
VISIT WEBSITE
Irvine, CA
Phone: 949-727-3315
Neurosurgeon at USC Keck School of Medicine
Los Angeles, CA
Good with EDS stent procedures
Email: kenneth.c.liu.md@gmail.com
Founder of Ehlers-Danlos Group of Silicone Valley
Northern CA
Phone: 408-257-2225
Pediatric Cardiologist
Pleasanton, CA
Phone: 925-416-0100
Pain management, EDS, Spinal CSF leak, Dysautonomia, CCI
Upland, CA
Phone: 909-703-3977
Email: healeddandempowered@gmail.com
VISIT WEBSITE
Board certified in adult and pediatrics, and certifications in Clinical Immunology, Allergy and Pulmonary Medicine
Phone: (562) 933-8567
Division Chief of CHOC Children’s Specialists Cardiology
Familiar with POTS and Dysautonomia
Phone: (714) 509-3939
Fax: (714) 509-3949
Kaiser Permanente
Knowledgeable about RSD/CRPS
Oakland. CA, 94611
Phone: 510-655-4000/510-752-1000
Neurosurgery, CSF Leaks
Los Angeles, CA
Cedars-Sinai/Stanford
Phone: 800-233-2771
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
Mary L. Johnson Pediatric Ambulatory Care Center
Pediatric Pain Management Clinic, Inpatient and Outpatient
Phone: (650) 497-8977
Fax: (650) 724-5344
Medical Genetics, Pediatrics
UC Davis
Phone: 800-282-3284
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
Colorado
Works with Dr. Chopra for Low-Dose Naltrexone
Phone: 720-557-9363
Littleton Clinic
Understands MTHR/Detox and EDS Pain
Phone: 720-351-2411
Compounding Pharmacy for IDN/Will Mail
251 Violet Street, Sweet 140
Golden, CO 80401
Phone: 303-763-5533
www.BelmarPharmacy.com
Neurosurgeon
Englewood, CO
Pediatric Cardiologist
Familiar with Dysautonomia and Complex POTS
Denver, Colorado
Phone: 303-860-9933
VISIT WEBSITE
Alpine Health and Wellness
Knows CRPS, Ketamine Infusions
Phone: 720-519-0678
CRPS and EDS-Aware PT
Phone: 303-797-0988
Immunology/Knows MCAS
Phone: 303-773-9000
GI Specialist
Children’s Hospital of Denver
Phone: 720-777-6669
Certified Functional Neurologist
3230 E. Woodman Rd., Suite 110
Colorado Springs, CO 80920
Phone: 214-543-4744
ENT, CSF Leaks
Phone: 303-224-4711
Center for Multisystem Disease
Autoimmune Disease and Dysautonomia, IVIG
Denver, CO
Phone: 303-366-6633
www.centerformultisystemdisease.com
Physical Therapist
1831 Austin Bluffs Parkway; Suite 100
Colorado Springs, CO 80918
Phone: (719)599-8550 Fax: (719)218-9200
VISIT WEBSITE
Phone: 720-336-4300
Rheumatologist
Children’s Hospital of Denver
Phone: 720-777-6132
Connecticut
Pediatric Endocrinology
PCP, Trigger Points
Middlesex Primary/Family Medicine Residency
Middletown, CT
Takes Husky
Phone: 860-358-6418
Obstetrics and Gynecology
Women’s Healthcare of New Milford
New Milford & Torrington, CT
Rheumatology
Eastern CT Rheumatology
East Lyme, CT
Mixed Reviews
Pediatric Physical Therapy
CCMC
Farmington, CT
Dentistry
Manchester, CT
Geneticist
UConn Health
Farmington, CT
Phone: 860-679-1440
Manual Physical Therapy
Zen Body + Mind
West Hartford, CT
Phone: 860-648-0659
Volunteer State Ambassador for NORD
CT Rare Action Network
Stamford, CT
Email: lesleybennett@rareaction.org
Phone: 203-829-7650
Cardiovascular Genetics
Yale Cardiology or Yale Nuclear Cardiology
New Haven, CT
MMJ Certification
REN Health
Milford, CT
Bauerfeind Representative, Bracing
West Hartford, CT (can travel)
Email: charmassie@yahoo.com
Gastroenterology
Milford, CT
Dentistry
Farmington, CT
Cardiology, Interventional Cardiology, POTS
Yale Cardiology
New London & Branford, CT
Neurology, Headaches
New England Institute for Neurology and Headache
Stamford, CT
Phone: 203-914-1900
Pain Management, Medical Marijuana
Pain Management Associates of Connecticut
Ridgefield & Stamford, CT
Phone: 203-325-5700
Pulmonology
CCMC
Farmington & Hartford, CT
Rheumatology
New Haven Rheumatology
Milford & New Haven, CT
Chiropractic
Chiropractic Specialties of CT
New Milford, CT
Cardiology, POTS
Starling Physicians
Farmington & Glastonbury, CT
Dentistry
Guilford, CT
Osteopathic Manual Work
UConn Health
Farmington, CT
Neurology, Headaches, & Migraines
Headache Care Center
South Windsor, CT
Phone: 860-263-3603
Bracing (CPO & OTR)
Hanger Clinic
Torrington, CT
DO, Lyme Disease
Origins of Health
Berlin, CT
Dr. Zachau and Amy Smith-Bassett prescribe IDN
May be those there that do osteopathic manipulation therapy
Manchester & West Hartford, CT
Manual Physical Therapy
Crossroads Physical Therapy
Spiritual needs facility, may be “anti” certain medicines
Columbia, CT
Obstetrics and Gynecology
Woodland Women’s Health Associates
Hartford, Avon, & Glastonbury, CT
Neurology
Neurocare Health PC
Greenwich, CT
Allergy, Immunology, Hematology
PA Olivia Dellostritto, Hillary Trujillo-Hernandez pediatrics, Gavin Schwartz adults
West Hartford & Avon, CT
Pain Management, Osteopathy
Advanced Pain Solutions
West Redding, CT
Neurology
Integrated Neurology of Connecticut
Ashford, CT
Rheumatology
Rheumatology Specialists of CT
Phone: 860-432-8200
Physical Therapy, RSD/CRPS
Physical Therapy & Sports Medicine Centers
New London, CT
VISIT WEBSITE
Therapy
Familiar with CPRS
West Hartford, CT
Urology
Hartford Healthcare Medical Group
West Hartford and Plainville, CT
Physical Medicine
Physical Medicine/WCMG
Southbury and Danbury, CT
Dentistry & Pediatric Dentistry
Central Connecticut Pediatric Dentistry & Orthodontics
Middletown & Old Saybrook, CT
Cranio-Sacral Therapy, Massage
Bending Bridges Healing Therapies
North Stonington, CT
Group Member of CT Zebras
Gastroenterology
Yale University
New Haven, CT
Naturopathy, Acupuncture, Massage
Ashokan Natural Medicine
May be able to do exome testing/bloodwork
New Milford, CT
Phone: 203-794-6331
Pelvic Physical Therapy
Physical Rehabilitation Center
Middletown, CT
Phone: 860-358-2700
Cardiology, Heart Rhythm Disorders
Pat and Jim Calhoun Cardiology Center
Farmington, CT
Phone: 203-829-7650
Hematology, Oncology, Pediatrics
CCMC
Hartford, CT
Gastroenterology
Orthotics and Bracing
Therapy (LCSW)
Psychological Health Associates
West Hartford, CT
Feldenkrais, Alexander Method
Sound Moves
Bloomfield, CT
Manual Physical Therapy
Physical Therapy Services of Connecticut
Branford, CT
Allergy, Immunology
Bloomfield, CT
Phone: 860-286-0041
CranioSacral Therapy, EDS
CT Center for CranioSacral Therapy
Founder of CT Zebras Facebook Group, Has EDS Herself
New Milford, CT
Email: ctcranio@gmail.com
Phone: 860-488-0948
Website: www.ctcranio.com
MALS, Endovascular Surgery
Danbury, CT
Dentistry
Goodman & Stein
West Hartford, CT
Pain Management, MMJ
West Hartford, CT
Phone: 860-218-1725
DO, Physiatry
Hamden, CT
Obstetrics & Gynecology
Women’s Health Connecticut
Rocky Hill, Farmington, Hartford, & Glastonbury, CT
Cardio-Endocrinology, POTS, Hypertension, & Vasular Diseases
UConn Health
Farmington, CT
Phone: 860-679-3343
Gastroenterology
Connecticut GI
Farmington & Meridan, CT
Phone: 203-626-6540
Pain Management, Regenerative Medicine, PRP/Stem Cell
Valley Sports Physicians and Orthopedic Medicine
Glastonbury, CT
Psychology
Institute of Living
West Hartford, CT
Gastroenterology
Cardiology, POTS
Bristol, CT
Cardiology, Congenital Heart Defects
CCMC (Takes adult patients)
Hartford, CT
Neuro-Opthamology
Yale University
Therapy (Psychologist)
West Hartford, CT
Pain Management
Hartford Hospital Pain Management Treatment Center
West Hartford, CT
Psychology, Pediatric Psychology
300 Plaza Middlesex
Middletown, CT
Neuro-Opthamology
The Eye Care Group
Orange, Waterbury, and Southbury, CT
Phone: 203-789-2020
Family Medicine
Middlesex Healthy Family Medicine
Middletown, CT
Child Psychiatry
Psychological Health Associates
West Hartford, CT
Occupational Hand Therapy, Silver Ring Splints
Hospital for Special Care
New Britain, CT
Adult Psychiatry
West Hartford, CT
Phone: 860-216-9760
Physical Therapy, Manual Physical Therapy
Carlson Therapy Network
New Milford, CT
Cranio-Sacral Therapy
Wellspring Therapies
New London, CT
Neurology, DO
Danbury, Waterbury, & New Milford, CT
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
Genome Testing
DC
Anesthesiology, Pain Management
Capitol Surgical Center and Metropolitan Medical Center
Bethesda, DC
Phone: 301-530-7303/202-775-7246
Neurology
George Washington University
Neuromuscular disease, post-herpetic neuralgia/subcutaneous botox, botox for migraines
Phone: 240-477-5650
Pediatric Endocrinology, Motility
Children’s National Medical Center
Phone: 202-476-5000
Consultive/Preventative Cardiology, Mind-Body Medicine
Cardiology Associates
Prescribes sleep medicine
Phone: 202-822-9356
Pain Recovery, Rehab, PT, Massage
QuistMD The Flexibility, Sports, and Rehab Clinic
Phone: 202-244-8222
Pediatric and Adult Geneticist
Phone: 202-422-2000
Neurology
Neurology Center
Phone: 301-562-7200
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
Hematology (Helpful for EDS)
Medstar Health
Phone: 202-444-2198
Director of Pituitary Endocrinology
Medstar Pituitary Center
Washington, DC
Phone: 855-218-0446
Gastroenterology
Capital Digestive Care and Metropolitan Gastroenterology Group
Bethesda and DC
Phone: <240-737-0085
Sleep Management, Headache Management, Epilepsy/em>
Medstar NRH and Washington Hospital Center
Phone: 202-877-5119
Pediatric Cardiology
Phone: 202-476-2090
Neurology/em>
Georgetown University Hospital
Phone: 202-444-8525
Pain Management/em>
WHC
Phone: 202-877-3442
Cardiology/em>
Medstar
Phone: 202-444-5111
Delaware
Florida
Genetics
May do telehealth
Email: DrA@AtwalClinic.com
Phone: 904-364-9985
www.AtwalClinic.Com
Immunology, MCAS, and Mastocytosis
Florida Medical Clinic
Phone: 813-388-6855
Pain Management, CRPS
Jacksonville, FL
Phone: 904-448-2005
PT, DPT, COMT
Actify PT
Boca Raton, FL
Phone: 561-366-2435
drperreto on Instagram
www.actifypt.com
Neurosurgery
Jacksonville, FL
Phone: 904-308-2006
Pediatric Gastroenterology, Gastroparesis
Orlando Health and Arnold Palmer Hospital
Phone: 321-841-3338
Ketamine Treatments for CRPS/Pain
Florida Spine Institute
2250 Drew Street
Clearwater, FL
Phone: 727-797-7463
Cranio-Sacral Therapist
Palm Beach Gardens
Email: fstahlman@yahoo.com
Phone: 239-398-3154
www.theupledgerinstituteclinic.com
Pediatric Cardiology
Familiar with POTS and Dysautonomia
Phone: 954-972-1600
Pediatric Geneticist
Familiar with EDS
Georgia
Genetics, Mitochondrial and Metabolic Diseases
VMP Genetics
Atlanta, GA
Email: info@vmpgenetics.com
Phone: 404-793-7800
www.vmpgenetics.com
CRPS, Blocks, Ketamine Infusions
Southeastern Interventional Pain Associates
Atlanta, GA
Phone: 770-558-8501
Illinois
Chiropractor
Warren, IL
Phone: (586) 576-0701
Geneticist
Park Ridge, IL
Phone: (847) 723-7705
Indiana
Physiatrist
South Bend, IN
Phone: 360-647-8358/574-256-9032
Pediatric Geneticist, EDS Expert
St. Vincent Hospital
Indianapolis, IN
Phone: 317-338-5288
Genetics, EDS Expert
Indiana University/IUHP
Phone: 317-944-3966
Fax: 317-968-1354
Email: IUHPGenetics@iuhealth.org
Riley Hospital, Pediatric Pain Clinic
705 Riley Hospital Drive, Indianapolis, IN 46202
Phone: (317) 944-5000
RN Case Manager, Medical and Molecular Genetics
Indiana University/IUHP
Indianapolis, IN
Fax: 317-968-1354
Email: IUHPGenetics@iuhealth.org
IUHP Medical & Molecular Genetics
975 west Walnut Street IB-130 Indianapolis IN 46202
Phone: 317-948-7450
Fax: 317-274-2387
Allergist
Geneticist
South Bend, Indiana
Phone: (574) 247-9441
Genetic Counseling
Phone: 317-274-2388/317-274-3901
Maine
Maryland
Medical Management of Pain, Musculoskeletal
Rockville, MD
Phone: 301-770-6301
Nuclear Cardiology
Chevy Chase, MD
Phone: 301-656-5050
Manual Therapy, MFR, Cold Laser Therapy, Dry Needling, CRPS, EDS
Bethesda Physiocare
4405 East West Highway Ste 403
Bethesda, MD
Phone: 301-656-5613
Cardiology
Johns Hopkins
Columbia, MD
Phone: 443-997-0270
Anesthesiology and Pain Management
Capitol Surgical Center and Metropolitan Medical Center DC
Bethesda, MD
Phone: 301-530-7303/202-775-7246
Neurology/POTS
Headache Management Center
Columbia, MD
Phone: 410-997-3113
Vascular Surgery
Johns Hopkins
Baltimore, MD
Phone: 410-955-5165
Pediatric Genetics
GBMC
Baltimore, MD
Phone: 443-849-3131
Urogynecology
GBMC
Towson, MD
Phone: 443-849-2767
Radiology (CCI readings)
Diagnostic Imaging Associates (Doctor’s Community Hospital)
Lanham, MD
Phone: 301-459-7990
Physical Therapy
Cornerstone Physical Therapy
Frederick, MD
Email: info@cornerstonept.net
Phone: 443-849-3131
www.cornerstonept.net
Physical Med and Rehabilitation
Johns Hopkins
Concussion, EDS, Dysautonomia
Phone: 443-997-6754 (MD), 410-464-6641 (outside MD)
Hopkinsmedicine.org
Neurosurgery
Johns Hopkins
Familiar with TOS
Gastroenterology
Capital Digestive Care and Metropolitan Gastroenterology Group
Bethesda, MD, and DC
Phone: 240-737-0085
Pain Management
Johns Hopkins
Primary Care, Familiar with EDS
Johns Hopkins
Baltimore, MD
Phone: 410-583-2774
Chronic Pain Management, Musculoskeletal
Rockville, MD
Phone: 301-770-6301
Neurosurgery
Johns Hopkins Hospital and Bayview Medical Center
CSF disorders and leaks, hydrocephalus, chiari
Phone: 410-955-7482
Dellon Institutes for Peripheral Nerve Surgery
Phone: 1-877-335-5661
Gynecology
Center for Pelvic Pain
Annapolis, MD
Phone: 410-573-1436
Pediatrics and Genetics
Johns Hopkins
Baltimore, MD
Phone: 410-614-0701
Dentistry
Sleep Apnea, TMJ
Bethesda, MD
Phone: 301-530-8570
Physical Therapy
Bethesda Physiocare and PhysioFitness
Bethesda and Rockville, MD
Phone: 301-656-5613
Opthamology
Genetic eye disease and pediatric opthamology
Neurology
Bethesda and Olney, MD
Phone: 301-260-7600
Dentistry
Facial Pain, TMJ, Bowie
Phone: 301-805-9400
Neurology, Headaches, POTS
Johns Hopkins
Baltimore and Annapolis, MD
Phone: 410-955-4259
Attorney (Social Sector, Disability)
Silver Spring, MD
Phone: 301-495-6665
Privia Health
Rockville, MD
Phone: 301-762-6777
Osteopathic Manipulation and Manual PT
Chevy Chase, MD
Phone: 240-743-4287
Pediatric Neurology
Bethesda Child Neurology
Gaithersburg, MD
Phone: 240-477-5650
Cardiology
Owing Mills, MD
Phone: 410-654-0400
Eunice Kennedy Shriver National Institute of Child Health and Human Development
Bethesda, MD
Phone: 301-451-8822
Genetics, EDS Expert
Indiana University/IUHP
Phone: 317-944-3966
Fax: 317-968-1354
Email: IUHPGenetics@iuhealth.org
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
Pediatric Endocrinology
NIH
Allergist
Institute for Asthma and Allergy
Silver Spring, MD
Phone: 301-962-5800
Neurology and Pain Management
Neurology Center
Botox for migraines, neuropathic pain managed without opiates
Potomac, MD
Phone: 301-562-7200
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
Anesthesiology and Pain Management
Silver Spring, MD
Phone: 301-933-8840
Neurology
Point Performance
Physical med and rehab, dry needling, acupunture, trigger point injections
Bethesda, MD
Phone: 301-493-8884
Pediatric Genetics
Bethesda, MD
Phone: 301-451-0900
Education Lawyer/Advocate
Can help with school IEP and 504
Frederick, MD
Phone: 301-825-9010
Neurosurgery, Board Certified
Familiar with chiari and occult tethered cord
Phone: 301-654-9390
Neurology
Neurology Center
Headache botox and facial pain
Potomac, MD
Phone: 301-562-7200
Cerebrovascular Neurosurgery
Johns Hopkins
Aneurysms and Arterial Venous Malformation
Baltimore, MD
Phone: 410-502-5767
Dentistry
Oral surgery, Bowie
Phone: 301-352-6311
Anesthesiology and Pain Management
Familiar with chiari and occult tethered cord
Phone: 301-654-9390
Prism Spine and Joint
Silver Spring, MD
Phone: 240-600-0177
Urogynecology
Medstar Health
Rockville, MD
Phone: 202-877-6526
Massachusetts
Pediatric Endocrinologist
Familiar with secondary Vitamin D deficiency, thyroid disorders that may accompany some chronic pain conditions
Phone: 617-636-8100
WEBSITE
Genetics
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
Pain Management Doctor
Phone: 603-629-8020
Anesthesiology, Pain Management, AMPS
Mass General Hospital
Pediatric Cardiology
Boston Children’s Hospital
Phone: 617-355-4278
Pediatric Orthopedic Surgeon
Familiar with joint instability and conservative measures to stabilize them
VISIT WEBSITE
Some know TMJ
Orthopedics, Hand and Upper Arm, Custom Bracing
Tufts Medical Center, Boston
Familiar with EDS
Phone: 617-636-5150
Genetics
Center for Human Genetics
Cambridge, MA
Email: jmilunsky@chginc.org
Phone: 617-492-5106
Fax: 617-492-7092
www.chginc.org
Primary Care Provider
One Medical Government Center
Worcester, MA
Pediatric Cardiologist
Extremely versed in dysautonomia, POTS, and other types of syncope that accompany mitochondrial dysfunction, EDS, or RSD/CRPS
VISIT WEBSITE
Thoractic Outlet Syndrome
Mass General Hospital
Rheumatology
Brigham and Women’s
Pain management
Palliative Care/Hospice
Danvers, MA
888-283-1722
MA Support Group Admin, Expert on EDS/Marfan’s Disability Issues
Allergy, Immunology, MCAS, and Mastocytosis
BWH Boston
Phone: 617-732-9850
Fax: 617-525-1310
Clinical Psychology
Teens and adults in western Massachusetts
Specializes in mood disorders/anxiety and chronic physical illnesses
Phone: 413-206-2173
Facebook Group
Pediatric Gastroenterologist
Familiar with motility disorders such as gastroparesis, abdominal pain that accompany many pediatric pain conditions
VISIT WEBSITE
Pediatric and Adult Neuro-Opthalmologist
Familiar with Ehlers-Danlos and Mitochondrial Disorders
VISIT WEBSITE
Neurology
Tufts Boston
Phone: 617-636-8100
Genetics
Mass General Hospital
Phone: 617-726-1561
Gastroenterology
Mass General Hospital
Phone: 617-726-1561
Cannabis Specialist
inhaleMD
Brookline and Cambridge, MA
Phone: 617-861-8519
Pediatric and Adult Connective Tissue Geneticist
Familiar with Connective Tissue Disorders
Phone: 617-414-4841
VISIT WEBSITE
Neurology
Boston Children’s Hospital
Neurology, Good POTS Diagnostician
St. Elizabeth’s Medical Center
Brighton, MA
Phone: 617-789-3000
Pediatrician
Familiar with helping to manage as a pediatrician chronic pain cases.
Phone: (781) 487-4340
Endocrinology
Boston, MA
Phone: 617-638-7470
Shoulder Specialist
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
Pediatric Physiatrist
Familiar with and able to work with gait abnormalities encountered in Ehlers-Danlos Patients and RSD/CRPS.
VISIT WEBSITE
Pain Management, Psychiatry
Brigham Women’s Faulker Hospital
Boston, MA
Phone: 617-983-7080
Cardiology, Dysautonomia
Holyoke, MA
Phone: 413-315-3117
Attorney
Personal injury, wills, trusts, estates, SSDI, worker’s comp, divorce, bankruptcy, custody
Email: KKaneLaw@comcast.net
Michigan
Cardiology
Rochester, MI
Phone: (248) 551-3000
Dysautonomia
Pain Management Specialist
Grand Rapids, MI
Phone: 616-285-1377
Dermatology
Sterling Heights, MI
Phone: 586-685-3285
Rheumatology
Clinton Township, MI
Phone: (586) 859-0632
Rheumatology
Ann Arbor, MI
Phone: (734) 623-0100
Neurology
Rochester Hills; MI
Phone: (248) 852-1777
Lansing, MI
Physiatrist (pain management)
Clinton Township, MI
Phone: 586-228-2882
Minnesota
Physical Medicine and Rehabilitation Services
Park Nicollet Clinic
3800 Park Nicolle Blvd
Minneapolis, MN
Phone: 952-993-3800
Fax: 952-993-11392
VISIT WEBSITE
Family, Certified Functional Medical Practitioner
Minneapolis, MN
Phone: 612-345-5029
Email: drkathopkins@gmail.com
VISIT WEBSITE
EDS, MCAS, POTS
Complex Cares, LLC
Shoreview, MN
Phone: 651-756-9596
Email: info@ComplexCaresMN.com
VISIT WEBSITE
Physical Therapy
Replenish Wellbeing
Minneapolis, MN
Phone: 612-394-6658
Missouri
Pediatric GI for HATS and MCAS
Phone: 601-984-4540
Nebraska
Genetic Medicine, Munroe-Meyer Institute
985450 Nebraska Medical Center
Omaha, Nebraska
Phone: 402-559-3446
Nevada
Surgeon, Nerve Entrapment
Henderson, NV
Phone: 702-666-0463
New Hampshire
New York (Upstate)
Internal Medicine, Alden Medical Group
Familiar with EDS
Phone: 716-218-3887
Pediatrician
Familiar with EDS
Phone: 315-487-1541
Physical Medicine and Rehabilitation
Familiar with EDS
Syracuse, NY
Phone: 315-464-5820
Professor of Pediatrics, Physiology and Medicine; Director of the Center for Hypotension
New York Medical College; Valhalla, NY
VISIT WEBSITE
North Carolina
Division Chief, Pediatric Neurosurgery, Duke Medicine
Familiar with hydrocephalus and Chiari malformations
VISIT WEBSITE
Ohio
Pediatric Neurologist interested in Neurodegenerative Disorders and Metabolic Disorders
Cleveland Clinic, Ohio
VISIT WEBSITE
Geneticist
University Hospitals of Cleveland
Phone: (216) 844-3936
Rhode Island
Pain Management Specialist
Familiar with EDS/RSD/CRPS and other Chronic Pain Conditions. Primarily serves adults but will see children.
VISIT WEBSITE
Physical Therapist
Very familiar with EDS and manual physical therapy for the EDS patient young and old.
VISIT WEBSITE
Physical Therapist
Specializes in craniosacral therapy, Very Familiar with EDS and RSD/CRPS and other spinal issues.
VISIT WEBSITE
South Carolina
Physical Therapist, Crunk Physical Therapy, Greenville
Familiar with recognizing and working with pediatric pain conditions.
Pediatric Neurology, Greenville Hospital System
Familiar with chiari
VISIT WEBSITE
Texas
Virginia
Pediatric Neurosurgeon
Familiar with EDS
Children’s Hospital of the King’s Daughters, Norfolk
Phone: (757) 668-7990
Familiar with EDS and TMJ
Richmond.
Pediatric Neurologist
Familiar with Dysautonomia, POTS and Mitochondrial Disorders
Phone: 804-828-9720
Pediatric Neurosurgeon
Harold F. Young Neurosurgical Center, Richmond
Phone: (804) 828-9165, Fax: (804) 828-0374
Wisconsin
Orthopedic Specialist, Aspen Orthopedics
Familiar with surgical repair of Ehlers-Danlos Ligamentous Injuries in both children and adults
VISIT WEBSITE
Children’s Hospital of Wisconsin, Milwaukee
Experienced in treating PIDD
Phone: 414-266-6840
Children’s Hospital of Wisconsin, Wauwatosa
Experienced in treating PIDD
Phone: 414-266-6293
Children’s Hospital Of Wisconsin, Wauwatosa
Experienced in treating PIDD
Phone: 414-266-6840
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.