Trusted Practitioners + Groups

New Mexico Providers, Remote Specialists, and Advocacy/Info/Support Groups

Most of my contacts are in Santa Fe--please feel free to make suggestions for this list and to include your review of each party: sarah@lightspiritstudio.com. *Hypermobility-versed care providers and diagnosticians are noted where possible.

Santa Fe

Insurance-Based Primary Care (MD, ND)

Northern New Mexico Family and Functional Medicine--a holistic viewpoint promoting functional nutrition.
Jennifer Prosser, MD: Jennifer was a committed advocate in working with her colleague Samual Faught, MD to make at least one hEDS diagnosis.
Katie Doster, DO, La Familia Southside: 505-982-4425. Excellent reviews from a client: willing to research and listen, compassionate, great bedside manner.

Functional & Investigative Medicine

Hannah Rikoon, ND–focused on women's health, fertility, and hormonal balance; works a lot with gut repair and gut health. Familiar with MCAS, dysautonomia, POTS. Kind & skillful. Sliding scale, no insurance billing.
360 Medicine–focused on the whole health picture and on the issues that are hard to track down in most care. The practice is typically full but it may be worth a try getting in if his kind of medicine is what you need--referrals and shared networks can help. Self-pay only.
Forouz Jowkar, PA-C, Ph.D–investigative, functional, test oriented care specializing in GI and biochemical individuality. Refers out for MCAS. Self-pay only.
Christy Kithil, ND–EDS aware–recommended by a past client.
Gina Ortiz, PA-C--integrative physician assistant--a couple of my current clients who are problematically hypermobile are appreciating working with her.
Eric Grasser, MD--concierge practice in Ayurvedic and Western medicine
Javier Seufferheld, MD-- javiseufferheld@gmail.com, 217-250-7050--functional, Ayurvedic, and herbal medicine practiced on a conventional foundational training in Altitude & Performance Medicine. His work involves helping clients to increase their capacity to manage oxidative stress and keep mitochondria healthy through meganutrition. I'm excited to see how his therapies may work for those whose chronic pain or other symptoms have worsened with altitude--a story I've often heard from clients with Ehlers-Danlos Syndrome or hypermobility.

Allergy & Immunology

Corey Clay, MD, PhD--histamine intolerance, mast cell activation syndrome, allergies

Cardiology

Lucas Chacon-Lutrick, MD Cardiology Christus: 505-984-8012. Reported by an EDS/Chiari patient: “Knows dysautonomia. Great bedside manner.”
Benjamin Remo, MD Cardiology Christus: 505-8012. Electrophysiology. Good reviews from EDS/dysautonomia/MCAS patient.
Marcellin Simard, MD–would likely be responsive to information about EDS, MCAS, and dysautonomia–bring resources or send in advance. Kind and helpful; offers appropriate credibility to invisible symptoms.

Cranial & European Osteopaths

Dr. Onik
Musculoskeletal Specialists--This group is not made up of osteopaths but of massage therapists whose work is heavily sourced from European Osteopathic techniques. Their work is incisive. I send many clients here--particularly those with treatment-resistant or complex conditions in which manual work may be helpful. The group is not in Santa Fe but Los Alamos--it's worth the drive if it's the right fit, so I include it here. They take most insurances

Bodywork

Sarah Johnson, LMT, Patient Advocate, (me), Light Spirit Studio--hypermobility-aware manual therapies for chronic pain, neurovascular decompression.
Daniel Healey–Integrated bodywork & colon hydrotherapy. Works with lots of neurology & chronic pain patients. Excellent bedside manner.
Hilary Kingman, Stillwater Wellness--recommended by a colleague's contacts for craniosacral therapy
Katia Van Horn, LMT--katiavanhorn@gmail.com--craniosacral therapy
David Lang, LMT--very skilled working with children and complex cases, palliative care

Doctors of Oriental Medicine, Dry Needling, & E-stim

Michael Haner, DOM–505-660-9058.”Compassionate, excellent human” reported by a complex EDS patient.
Dennis Barteck–Dry needling with e-stim, shockwave, EMTT. Helpful to a complex EDS patient. Willing to do research.

Jason Hao,1 DOM--a neuroacupuncturist with excellent reviews from quite a few clients
Kelly Frith, DOM--histamine intolerance & MCAS familiar, fertility, herbal medicine--bills Cigna
Mita Khalsa, DOM--505-690-0605--Acupuncturist. No insurance billing except with Motor Vehicle Collisions cases. Familiar with MCAS.
Mavrick Lobe, DOM1 505-577-1588–PRP/prolotherapy

Occupational Therapy

Alyssa, Christus occupational therapy. Excellent reviews from an EDS/Chiari/tethered cord patient. Systems-scale awareness while working. Christus’ administrative system has all patients work with all therapists, however, not just favorites.
Brenda Chavez, Christus Sports Medicine & Therapy Services. Journal Club member. Experience with EDS. Sought connection with our groups on the suggestion of a patient and would like to learn to better serve members of this community.

Epileptology

Taryn Denezpi UNM Neuro Science Center. Epileptologist–good reviews from EDS/dysautonomia/MCAS patient.

Pain Care

David Rosen, MD–Ketamine and concierge emergency care. Has worked with at least a few of our group members with chronic pain
Jonas Skardis, DOM--800-702-6676–PRP & prolotherapy--EDS and hypermobility aware
DP Khalsa--DO–PRP, prolotherapy--a doctor previously working at his clinic (now out of state) was listed as serving the EDS population, so odds are good that DP is at least aware of EDS and he may have some alternate referrals to offer.

Pharmacy

Oliver and Kieth–Southwest Care Pharmacy, Harkle–one complex EDS patient has appreciated working with these providers

Physical Therapy

Katie Dewar, PT, DPT, PRPC--La Hoya Health, 561-644-3738--pelvic floor and core focused physical therapy in Santa Fe (Aldea). EDS specialist; organizes a local interdisciplinary provider meetup and journal club around hypermobility and other underserved health issues.
Method Physical Therapy, 505-218-9740.--a pelvic floor focused physical therapy clinic in Santa Fe and Albuquerque, highly aware of EDS and hypermobility--no insurance billing
Lauren Rose,1 PT--visceral work, pelvic floor work--no insurance billing
Jean Anne Zollars, PT--pediatric only, manual lymphatic drainage, visceral and neural manipulation, pelvic floor work

Neurology

Dr Wengs, EMG–stong review from complex EDS patient.

Rheumatology

Samuel Faught, MD–aided one client in receiving her hEDS diagnosis with Jennifer Prosser, MD.

TMJ & Speech Language Pathology

Melissa Wilson,1 M.Ed., CCC/SLP, COM--orofacial myology, TMJ, speech language pathology

Manual Lymphatic Drainage

Julie Strassburger, LMT--manual lymphatic drainage, craniosacral therapy
Lily O'Leary--manual lymphatic drainage, myofascial and other manual therapies
Deana Benjamin, PT--Christus--hypermobility aware
See also Jean Anne Zollars (Physical Therapists)

Nutrition

Redo Nutrition--"functional nutrition approach for diabetes and insulin resistance associated conditions, autoimmune disorders, gastrointestinal dysfunction, identifying food sensitivities, histamine intolerance and mast cell activation syndrome (MCAS), POTS/dysautonomia, and other issues."--telehealth, no insurance
Amadea Morningstar, MA, RPE, RYT--local, in person. Ayurvedic approach. No insurance.

PRP, PRF, Prolotherapy

Jonas Skardis, DOM--800-702-6676–PRP & prolotherapy--EDS and hypermobility aware
DP Khalsa--DO–PRF--a doctor previously working at his clinic (now out of state) was listed as serving the EDS population, so odds are good that DP is at least aware of EDS and he may have some alternate referrals to offer

Personal Training and Exercise Instructors

virtual hypermobility-focused training groups from a hypermobile, MCAS aware personal trainer
Kevin Bowen, Owner/Director, Pilates Teacher--a hypermobile client is very happy working with him and says that he's great at adapting exercises for special needs
Serina Carrasco--Feldenkrais practitioner--Santa Fe--EDS aware

Naprapaths & Chiropractors

Denise Gabaldon-Thronas, DN--naprapathy, nutrition, works very well with hypermobility. Fairly long waits to see her, but for good reason.
Travis Mason, DN, DC, MS--naprapathy and chiropractic with a gentle touch

Integrative Care

UNM Center for Life, (Albuquerque)--505-925-7464--a high quality integrative care clinic

Concierge Emergency Medicine

David Rosen, MD--EDS aware

Mental Health Care Providers

Monica Robbins, LMSW--505-577-1808--remote mental health counseling--bills insurance. Not EDS-aware, but we can work together awareness if she turns out to be a good fit for you.

Allergy/Sensitivity Friendly Retail

Soap & Supply–bulk source for cleaning and body products that tend to be easier on those with MCAS, allergies, and/or sensitivities

Albuquerque

Primary Care Providers

Ann Trout, MD. Rheumatologist–diagnosed one client with HSD.
Veneta Ianakieva, MD. Family Practice–provisionally diagnosed one client with vEDS.
Catherine Seat, DC. EDS focused chiropractor & functional nutritionist

Geneticists

A geneticist in Albuquerque or Santa Fe was able to help one client rule out rarer forms of EDS and various other conditions mistakable for EDS but was not familiar with current diagnostic standards. If I’m able to get her name I’ll add it and contact her to see whether she’d like to connect with the group.

Physical Therapy

Balance Physical Therapy & Wellness, ABQ. Pelvic floor, aquatics, neuro, Schroth method, speech language pathology, lymphatic work, vestibular work, occupational therapy…. Very strong reviews from a complex EDS patient.
Method Physical Therapy
Stephanie Baca, PT. diagnosed one client with hEDS
Richy Mathew, VibrantCare Rehabilitation–exploring EDS care dedicatedly with an hEDS patient.

Los Alamos

Bodywork

Musculoskeletal Specialists–Los Alamos, NM–EDS awareness and experience–manual nerve decompression, visceral manipulation, and related approaches–similarities with European Osteopathy.

Las Cruces

Diagnostics

Dr. Rosario Nadorra, El Paso Integrated Physicians–was mentioned positively online with respect to a search for an EDS diagnosis

Colorado

Jill Schofield, MD–Center for Multisystem Disease, Denver
Colorado University Anschutz–Jill Schofield teaches here; several local EDS patients travel for care
Stuart Kassan, MD–Specializes in EDS/HSD, rheumatoid arthritis, SLE, Sjogren’s syndrome–has helped at least one or two Santa Fe EDS patients with diagnosis.
Linda Bluestein, MD, Denver–specializes in EDS, HSD, and co-occuring conditions. You may wish to acquaint yourself with her work prior to scheduling via her Bendy Bodies Podcast, which hosts EDS and MCAS experts generally of the Consensus-2 leaning.
Patty Stott, PT, Elevation Wellness–HSD/EDS, MCAS, and POTS consultations and treatments–will likely be able to help you connect with diagnosticians in the area

Texas

Texas does have some good treatment and diagnostic options, but I don’t know many names yet and haven’t had the opportunity to connect with anyone there. See below and try to find contacts through Christie Cox, Patient Advocate in TX, or among the Centers of Excellence and Specialized Practitioners listed with the EDS Society

Other EDS/HSD-aware providers recommended by a client in TX:

Katie Volkers, APRN, Peak Injury Treatment Method
Jonathan Parr, PT, Parr Physical Therapy

Arizona

Mayo Phoenix: doesn’t take out of state Medicaid. Cardiology requires referral. Dermatology doesn’t require referral. Vascular–doesn’t treat in this region. Clinical Genomics/Connective Tissue–doesn’t treat in this region.
Dacre Knight of the EDS team in Florida says that the team does a lot of consulting with patients’ home doctors once they’ve been seen–if Mayo in Phoenix, AZ is an accessible option, you might ask whether they can consult internally with doctors there throughout the diagnostic process instead of requiring travel to Florida. Insurance coverage may be different in Florida and Rochester Mayo clinics.
Dr Saperstine in Arizona–one referral to this doctor was mentioned online

Telehealth/Travel for Care

The EDS Clinic: a telehealth clinic–can do a lot virtually from conversation, labs, and imaging done near you.
Mayo in Florida has a whole EDS clinic in which Dacre Knight, MD plays a significant role. The clinic does offer consult with local doctors, I believe, so you may be able to work remotely through local testing or continue work locally with consult available if you find a willing provider here. At least several clients and friends have been diagnosed remotely by someone in Florida, and I haven't been clear on whom that was but it seems a good bet it was someone at Mayo. Consensus-2 awareness in MCAS diagnosis and treatment.
Centers and Networks of Excellence for EDS and Hypermobility diagnosis and care are listed here by the EDS Society
genomemedical.com–a highly complex EDS patient has found it valuable to work with this group through telehealth
Mast Cell Masterminds--this list of providers dedicated to investigating Mast Cell Activation Syndrome is filled with names I've come to see as truly impressive--people who have made a huge difference to me through their published work, public lectures, and advocacy
Sophia Health Institute--WA--a holistic integrative clinic working with chronic Lyme and other underserved diagnoses
AIM Center for Personalized Medicine--a specialty clinic for chronic Lyme disease, mast cell disorders, and complex illness. Is able to consult with local doctors and help guide local care. Consensus-2 vanguards.
Hypermobility Clinic at the Fascia Institute, New Orleans, LA

Other Resources

Group/Newsletter/Listserv

Meetings are irregular at this stage but we aim for monthly, in person or online, to discuss local resources, efforts to grow the network of care, and problem-solving. People find it useful just to have community that gets the challenges and can speak to them. I also announce classes on stabilization, MCAS, dysautonomia/POTS, etc. via that list. We're working on setting up a listserv in which people can exchange between meetings.

Provider Group

Katie Dewar of La Hoya Health in Aldea/Santa Fe is forming a Journal Club and Interdisciplinary Meetup for providers interested in specialization or just improving care for people with EDS and HSD. If any of your care providers would be interested have them contact Katie to get on the list: 561-644-3738.

High Quality Training for Providers & Patients

A printable letter with QR code linking numerous CE opportunities and other trainings (all very high quality, many free) in areas relevant to EDS/HSD/hypermobility and related conditions.

A Few Standout EDS Advocates

There are advocates specializing in a lot of areas of the EDS/HSD and related conditions world–here are a few who are highly experienced and who cover areas that I don’t yet know much about.

Maggie Buckley: EDS advocate for over 30 years–well versed in managing Social Security Disability access with EDS and other highly technical areas
Akilah Cadet, akilah@changecadet.com–knows a lot about the disability space.

Support and Information Groups

Local Advocacy & Resource Organizations

Santa Fe Hypermobility Advocacy & Resource Group, Sarah Johnson, 505-310-0662, sarah@lightspiritstudio.com--We're a group of around 50 patients and healthcare providers with diagnosed or undiagnosed hypermobility and related conditions and/or expertise in managing them. We aim for roughly monthly digital or in-person meetings--steadiness and attendance will grow. We're looking to build a digital platform in which group members can connect between sessions. Occasional class series are held in collaboration with specialized providers. We also actively advocate to improve quality and breadth of care for EDS, HSD, MCAS, and related conditions in northern New Mexico; newcomers are welcome to advocacy projects underway or in planning.
Northern NM Interdisciplinary Provider Meetup and Journal Club--Katie Dewar, 505-615-9381--a new and growing group of providers dedicated to improving care for conditions often poorly met at present, centrally, hypermobility. Condition specific trainings, regular meetings, and a digital home for sharing exceptional material are in the works. Healthcare providers from any conventional or complementary modality are welcome.
Facebook Group: Ehlers-Danlos Syndrome New Mexico. Their practitioner list was assembled secondhand and may not be fully accurate but may be useful anyway. It lists practitioners reviewed as knowledgable or helpful with EDS and HSD, tips on managing care, and disability-related resources in New Mexico.

Non-Local Advocacy Organizations

The Ehlers Danlos Society: Information, support groups, colloquia
Mast Cell Action: Online support and resources
The Mast Cell Disease Society
American Initiative in Mast Cell Diseases
Chiari EDS Center at SUNY South Nassau--(list of current IRB studies)
American Autonomic Society
The Peripheral Nerve Society
Spinal CSF Leak Foundation
Neuroimmune Foundation
The Lipedema Project

Healthcare Provider Listing Sites

The Institute for Functional Medicine
The EDS Society keeps a list of directory of practitioners who have listed themselves as interested in or specializing in EDS and HSD care. Among these providers may be some who are willing and prepared to diagnose EDS. However, it can be harder to find providers who can cover other important aspects of care such as ruling out rare complications, identifying the full spectrum of any related conditions, and lining up appropriate care for those.