What I Learned at the International EDS Conference in Dallas Tx
Living with Ehlers-Danlos syndrome (EDS) or another hypermobility disorder often means managing much more than loose joints. Dysautonomia, gastrointestinal dysmotility, pelvic-organ prolapse, chronic pain, mast-cell symptoms, cerebrospinal fluid (CSF) leaks and vascular risks may require different specialists and different kinds of support.
I recently attended an international Ehlers-Danlos conference in the Dallas–Fort Worth area, and I returned with new clinical questions, practical tools and patient resources. Conferences like this remind me why continuing education matters: no practitioner can know every emerging tool, organization or research project, especially in a field evolving as quickly as hypermobility medicine.
This guide gathers some of the most useful resources I discovered in one place.
Important note: This article is for education only and is not individualized medical advice. Inclusion does not constitute an endorsement. Some resources are nonprofit organizations, while others are commercial products, private services or investigational treatments. Please evaluate each option with an appropriately qualified healthcare professional, particularly when vascular EDS, medication changes or serious neurological symptoms are involved.
A deeper view of mast cells, MCAD and MCAS
One of my conference highlights was hearing Anne Maitland, MD, PhD, an allergist-immunologist and widely recognized clinician and researcher in mast-cell disorders and their intersection with EDS and hypermobility.
The central idea I brought home was that mast cells should not automatically be viewed as “the enemy.” Mast cells are immune cells that respond to perceived threats and release chemical mediators as part of the body’s signaling and defense systems. When that response becomes excessive or poorly regulated, symptoms can develop—but the next clinical question is why the system is reacting. YES that’s where us regenerative naturopathic physicians work!
That invites a broader assessment of immune regulation and possible contributing factors rather than focusing on histamine or a single laboratory result alone. Depending on the person, evaluation may involve symptom patterns, infections, allergies, medication effects, environmental exposures, immune function, complement pathways and other medical conditions.
MCAD and MCAS are not interchangeable
Mast-cell activation disorders (MCAD) is a broad category. Mast-cell activation syndrome (MCAS) has more specific diagnostic criteria. Under widely used consensus criteria, an MCAS diagnosis generally requires:
- Recurrent, systemic episodes involving at least two organ systems
- Objective evidence of mast-cell mediator release during an episode
- Improvement with treatment directed at mast-cell mediators or activation
Tryptase deserves special clarification. A normal baseline tryptase does not, by itself, rule out all mast-cell activation. For consensus MCAS criteria, clinicians generally look for an event-related rise above the individual’s baseline—commonly calculated as baseline × 1.2 + 2 ng/mL—rather than simply asking whether the baseline number is “high.” Timing of the blood draw matters, and additional testing may be appropriate in selected cases.
Learn more:
- American Academy of Allergy, Asthma & Immunology: MCAS
- The Ehlers-Danlos Society: Mast Cell Disorders in EDS
- The Mast Cell Disease Society
- MastoConnect — patient registry and research connection platform
POTS and dysautonomia resources
Postural orthostatic tachycardia syndrome (POTS) is heterogeneous: two people can meet the same diagnostic criteria while having different underlying contributors. Potential mechanisms may include low circulating blood volume, neuropathic or hyperadrenergic physiology, immune or post-infectious factors, medication effects, deconditioning and connective-tissue-related blood pooling.
Environmental and heavy-metal exposures were also discussed at the conference. These may be worth investigating when a person’s history supports it, but they should not be presented as an established universal cause of POTS. Testing and treatment should be clinically justified rather than based on the diagnosis alone.
Resources and tools:
- Dysautonomia Support Network — education, peer support and patient advocacy
- Conference POTS workbook — add the QR code or direct download link supplied at the conference here
- Lumia — a commercial wearable earring designed to track head-level blood-flow trends along with other physiological data; follow @wearlumia for company updates
- Heavily Metalled — a patient-oriented podcast exploring heavy metals and chronic illness; included as a perspective, not proof that heavy metals cause POTS
Wearables may help identify patterns, but they do not independently diagnose POTS or replace medical evaluation.
Gastroparesis and digestive support
Gastroparesis
G-PACT provides education and advocacy for people living with gastroparesis, chronic intestinal pseudo-obstruction and related digestive motility disorders.
Their practical resources include cards explaining medically necessary needs, such as:
- Restroom access
- Exceptions for medically necessary bags or supplies at venues
- More private communication of chronic-disease accommodations
IBS with constipation
IBSRELA is the brand name for tenapanor, a prescription medication made by Ardelyx. It is FDA-approved for irritable bowel syndrome with constipation (IBS-C) in adults. It is not an IBS-D medication.
I am not recommending a medication simply because it appeared at the conference. I am including it so patients and clinicians know what was being discussed and can evaluate potential benefits, contraindications, adverse effects and alternatives together.
Joint, posture and compression support
The right external support may improve proprioception, reduce painful end-range movement or make daily activities more manageable. The goal is generally thoughtful support—not rigidly immobilizing every mobile joint.
Finger and thumb support
- Silver Ring Splint Company — commercial sterling-silver finger and thumb splints that combine joint support with a jewelry-like appearance
Whole-body and regional supports
- Body Braid — a commercial elastic bracing system designed to provide whole-body proprioceptive and postural feedback
- Armbie — commercial upper-body support garments
- Bauerfeind — commercial braces, compression garments and orthopedic supports
- Jelliebend — patient-created compression and support clothing
Fit matters. A brace or compression garment that is too tight, poorly positioned or used for the wrong purpose may irritate nerves, restrict circulation, increase skin problems or allow muscles to become overly dependent on support. A hypermobility-informed physical or occupational therapist can help select and fit devices.
Exercise and hypermobility-informed rehabilitation
Exercise for a hypermobile body should build strength, control, proprioception and confidence without repeatedly forcing vulnerable joints to end range.
- The Zebra Club — a commercial exercise and education platform created for people with hypermobility and EDS
- The Ehlers-Danlos Society EDS ECHO — professional education designed to expand knowledgeable care
- The Ehlers-Danlos Society healthcare professionals directory — a starting point for locating clinicians; directory inclusion is not a guarantee of suitability for every patient
Spinal CSF-leak education and research
A spinal cerebrospinal fluid leak can cause orthostatic headache—pain that is usually worse upright and improves when lying down—but presentations can vary. Possible symptoms may include neck pain, nausea, hearing changes, visual symptoms, imbalance or cognitive difficulties.
- Spinal CSF Leak Foundation — patient education, physician resources and research information
- ClinicalTrials.gov — search “spontaneous intracranial hypotension,” “spinal CSF leak” and “Ehlers-Danlos syndrome” for studies that are currently recruiting or active
Conference investigators also discussed studies involving spinal CSF leaks and EDS. Eligibility, referral requirements and enrollment status can change, so interested readers should consult the official study listing or contact the research center directly. I can also help established patients identify the appropriate publicly listed study contact when clinically relevant.
New sudden or severe headache, neurological deficits, altered consciousness or symptoms following significant trauma require prompt medical assessment.
Lipedema and pelvic-organ prolapse
Lipedema
- Lipedema Foundation — research, education and provider resources for lipedema
Pelvic-organ prolapse
- Association for Pelvic Organ Prolapse Support — education and peer support
Pelvic-floor care in hypermobility is not always about doing more Kegels. Some people need coordination, pressure management and relaxation before strengthening. A pelvic-health physical therapist who understands connective-tissue disorders can individualize the approach.
Genetic evaluation and testing
Genetic evaluation can be essential when the history suggests vascular EDS, Marfan syndrome, Loeys-Dietz syndrome or another genetically defined connective-tissue disorder. A negative panel does not currently rule out hypermobile EDS, because no single confirmed diagnostic gene is yet available for routine hEDS diagnosis.
- SequenceMD — a commercial genetic-testing and telemedicine service offering access to genetics professionals and medical interpretation
- The Ehlers-Danlos Society: Genetics and Inheritance — general education about EDS genetics
Before purchasing testing, ask exactly which genes are included, whether deletion/duplication analysis is performed, who interprets variants, whether genetic counseling is included and how uncertain findings will be handled.
Vascular EDS: emergency information, advocacy and research
Vascular Ehlers-Danlos syndrome (vEDS) requires specialized management because it can involve arterial and hollow-organ fragility.
- The VEDS Movement — a division of The Marfan Foundation providing education, advocacy and support
- VEDS 911 — emergency information intended to help patients, first responders, emergency clinicians and other healthcare professionals
The DiSCOVER celiprolol trial
Zevra Therapeutics is conducting the DiSCOVER Phase 3 clinical trial of celiprolol for people aged 15 years and older with genetically confirmed, COL3A1-positive vEDS. Celiprolol is the investigational medication; Zevra is the company conducting the trial. It is not currently an FDA-approved treatment for vEDS in the United States.
Trial eligibility and recruitment can change. Participation decisions should be made with the study investigators and the patient’s vEDS team.
Pain-management tools
External supports, pacing, rehabilitation, sleep, nutrition, medications and nervous-system regulation may all have a place in a comprehensive pain plan.
- Avazzia — commercial microcurrent and electrical-stimulation devices
Device claims, contraindications, FDA status and supporting evidence should be reviewed for the specific product and intended use. Electrical devices may be inappropriate in certain circumstances, including for some people with implanted electronic devices, and should be discussed with a qualified clinician.
Patient support and advocacy communities
- The Zebra Club — education, movement programs and community support
- EDS Support on Inspire — online peer community
- The VEDS Movement — vEDS education, advocacy and community
- Capacity Circle by VETANA — community and capacity-focused support; review current program details directly with the organization
Online groups can be invaluable for reducing isolation and finding practical ideas. They should complement—not replace—qualified medical care, and another member’s successful treatment may not be safe or appropriate for everyone.
Research and health-information platforms
- ClinicalTrials.gov — the most direct public registry for locating studies and confirming recruitment status
- TrialPort — a platform presented as helping rare-disease patients find research opportunities; confirm its current website, privacy policy and study-verification process before adding a direct link
- Guava Health — a commercial health-record and symptom-tracking platform that can combine health data and graph trends; review its current privacy and security documentation before connecting health accounts
“HIPAA compliant” does not automatically mean that a consumer app is covered by HIPAA in every context. Readers should review how information is stored, shared and deleted before uploading sensitive health data.
Podcasts and patient voices
- Hacking Hypermobility — conversations about EDS, hypermobility and related conditions
- Surviving Out of Spite — patient experience and chronic-illness conversations
- Heavily Metalled — discussions focused on heavy-metal exposure and chronic illness
Podcasts can introduce useful questions and lived experience, but they are not substitutes for peer-reviewed evidence or personalized medical assessment.
Books and further learning
- Loose Women by Dr. Amanda Lynn Hoffman — my guide for understanding and supporting hypermobile bodies; learn more at DrAmandaLynn.com
- The Hidden Epidemic: Subclinical Adrenal Insufficiency and Fatigue Syndromes by John J. Herbert, DC — a conference book recommendation; readers should distinguish the author’s framework from universally accepted endocrine diagnostic criteria
- Hormones and Hypermobility with Dr. Amanda Lynn Hoffman — my Ehlers-Danlos Society presentation; Female Summit Spring 2026. a free account or sign-in may be required
Hypermobility access and practical precautions
HypAccess is developing a New York-based model focused on making healthcare more accessible for people with hypermobility. Its resource collection addresses practical precautions and concerns, including medication risks, overstretching and adapting hands-on therapies for highly mobile bodies.
People with EDS and related connective-tissue disorders should ensure that every clinician knows their complete diagnosis and history. Medication or procedure risks can differ by EDS subtype, comorbidities and individual history. Do not discontinue a prescribed medication solely because it appears on a general precaution list; discuss the specific risk and alternatives with the prescriber.
My biggest takeaway
My strongest takeaway from Dallas was not one product, test or diagnosis. It was the importance of community and networking.
Rare diseases like us Loose Women have need a tribe to support us and get through. Support groups are amazing and Advocacy is available when you can’t.
My scientific excitment was hearing MD colleagues being urged to question the cause and shift views to a more whole person and holistic approach. Dr Maitland is though pretty cool and ahead of most!
Mast cells, the autonomic nervous system, digestion, circulation, hormones, connective tissue and the environment do not operate in isolation. At the same time, “root cause” should not become a reason to assume that one exposure explains every symptom. Good investigation stays curious while separating plausible hypotheses, personal observations and emerging science from what has actually been established.
If one of these resources helps you or someone you love feel less alone or better prepared for a medical appointment, please share this guide. I will continue updating it as resources, research and clinical trials evolve.
Much love my fellow spooners,
— Dr. Amanda Lynn Hoffman
Naturopathic Physician, Herbalist and author of Loose Women
DrAmandaLynn.com
