Skip to content
Inciteful Med

Building Your EDS Care Team & Specialist Referrals

Last updated:

Because Ehlers-Danlos Syndrome (EDS) affects multiple body systems, patients need a multidisciplinary care team. Key specialists often include a geneticist, physical therapist, cardiologist, gastroenterologist, and pain management specialist to address symptoms across the whole body.

Key Takeaways

  • • Managing Ehlers-Danlos Syndrome requires a multidisciplinary medical team because connective tissue disorders affect nearly every part of the body.
  • • A core EDS care team often includes a geneticist, physical therapist, pain management specialist, cardiologist, and gastroenterologist.
  • • Waitlists for geneticists can be long, but knowledgeable primary care doctors or rheumatologists can diagnose and manage clinical hypermobile EDS in the meantime.
  • • You can vet new doctors by asking if they use the current 2017 International Classification for EDS and how they manage non-joint symptoms.
  • • Prepare for appointments by bringing symptom logs, previous test results, a care summary, and a family history detailing hypermobility or vascular events.

Building a care team for Ehlers-Danlos Syndrome (EDS) is like putting together a complex puzzle. Because EDS affects nearly every part of the body, you cannot rely on a single doctor to manage everything [1][2]. Instead, you need a multidisciplinary team of specialists who understand how connective tissue impacts their specific field [3][4].

The Core Members of Your Team

While everyone’s team looks different, most patients benefit from including these key specialists [1][3][2]:

  • Geneticist: Usually the ideal first stop for confirming your specific subtype [5]. They can order the necessary genetic panels to rule out rarer, more serious types like Vascular EDS (vEDS) [6][7]. Note: Waitlists for geneticists can often be 1 to 2 years, and some clinics do not accept patients suspected only of having hEDS. Do not feel discouraged; a knowledgeable primary care doctor or rheumatologist can diagnose and manage clinical hEDS in the meantime.
  • Physical Therapist (PT): Perhaps the most important person on your long-term team [2]. Look for a PT who specifically understands hypermobility and focuses on stability rather than just flexibility [2][8].
  • Pain Management Specialist: Helps coordinate treatments for chronic widespread pain, including non-opioid medications and interventional procedures [1][9].
  • Cardiologist: Essential for screening for heart valve issues (like mitral valve prolapse) or managing POTS (racing heart and dizziness) [10][11].
  • Gastroenterologist: Helps manage the “slow” digestion (dysmotility) and reflux that are very common in the EDS population [12][13].

How to Vet a Specialist

Because EDS was once considered “rare,” many doctors may not have up-to-date knowledge [14][15]. You can use these three questions to help determine if a doctor is the right fit for your care:

  1. “Are you familiar with the 2017 International Classification for EDS?” This is the current “gold standard” for diagnosis [16][17]. If they are still using old terms like “Type 3,” they may not be current on the latest research.
  2. “How do you coordinate care for the ‘extra-articular’ (non-joint) symptoms of EDS?” A knowledgeable doctor knows that EDS is more than just loose joints; it involves the heart, stomach, and nervous system [1][18].
  3. “What is your approach to surgical referrals for hypermobile patients?” Experienced specialists are generally very cautious about elective surgery due to the high risk of poor wound healing and tissue fragility [1][19].

What to Bring to Your First Visit

To get the most out of a specialist appointment, come prepared with these “artifacts” [20][21]:

  • Detailed Family History: Draw a simple “family tree” noting anyone with hypermobility, stretchy skin, easy bruising, or early vascular events like aneurysms [22][23].
  • Symptom Logs: Bring a clear list of your symptoms across all systems (e.g., “Frequent dizziness when standing,” “Daily bloating,” “Shoulder subluxations 3x per week”) [20][24].
  • Previous Test Results: Especially echocardiograms (heart ultrasounds), previous genetic testing results, or imaging of your joints [10][7].
  • A “Summary of Care”: A one-page document listing your current diagnoses, medications, and the other doctors you are already seeing [21].

Remember, you are the leader of this team. If a specialist dismisses your symptoms or isn’t willing to learn about EDS, it is okay to look for a different provider who respects your expertise on your own body [14][25].

Frequently Asked Questions

What doctors should be on my EDS care team?
A comprehensive EDS care team typically includes a geneticist, a hypermobility-informed physical therapist, a pain management specialist, a cardiologist, and a gastroenterologist. Your specific team will depend on which of your body systems are most affected.
How do I know if a specialist is knowledgeable about EDS?
You can vet a doctor by asking if they are familiar with the 2017 International Classification for EDS. You should also ask how they manage non-joint symptoms and what their approach is to surgical referrals, as experienced EDS specialists are generally cautious about elective surgery.
Do I have to see a geneticist to be diagnosed with EDS?
While a geneticist is ideal for ordering panels to rule out rarer types like Vascular EDS, waitlists can take up to two years. In the meantime, a knowledgeable primary care doctor or rheumatologist can diagnose and manage clinical hypermobile EDS (hEDS).
What should I bring to my first appointment with an EDS specialist?
Bring a detailed family history noting relatives with hypermobility or early vascular events, a clear log of your daily symptoms, previous test results like echocardiograms, and a one-page summary of your current diagnoses and medications.

Questions for Your Doctor

  • • How familiar are you with the 2017 International Classification of the Ehlers-Danlos Syndromes?
  • • How do you approach the multisystemic nature of EDS, including things like POTS or digestive issues, in your treatment plan?
  • • What is your philosophy on surgery for patients with connective tissue disorders?
  • • Do you regularly collaborate with other specialists, like physical therapists or cardiologists, who have specific experience with EDS?
  • • If my clinical picture changes, what is the process for re-evaluating my diagnosis or ordering genetic testing?

Questions for You

  • • Which symptoms (e.g., joint pain, dizziness, stomach issues) am I currently managing on my own, and which ones need a specialist's help?
  • • Looking at my family tree, which relatives had 'stretchy skin,' 'double joints,' or 'unexplained' medical events like early aneurysms?
  • • What are my top three goals for my first appointment with a new specialist? (e.g., 'I want a plan for my hip pain' or 'I want to be screened for POTS')
  • • How much time and energy do I realistically have to dedicate to specialist appointments and physical therapy each week?

Want personalized information?

Type your question below to get evidence-based answers tailored to your situation.

References

  1. 1

    Chronic Low Back Pain Occurring in Association With Hypermobility Spectrum Disorder and Ehlers-Danlos Syndrome.

    Eseonu KC, Payne K, Ward S, et al.

    International journal of spine surgery 2021; (15(3)):449-457 doi:10.14444/8067.

    PMID: 33963027
  2. 2

    Recognizing and Effectively Managing Hypermobility-Related Conditions.

    Russek LN, Stott P, Simmonds J

    Physical therapy 2019; (99(9)):1189-1200 doi:10.1093/ptj/pzz078.

    PMID: 31158283
  3. 3

    Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature.

    Monaco A, Choi D, Uzun S, et al.

    Immunologic research 2022; (70(4)):419-431 doi:10.1007/s12026-022-09280-1.

    PMID: 35449490
  4. 4

    A review of Ehlers-Danlos syndrome.

    Miller E, Grosel JM

    JAAPA : official journal of the American Academy of Physician Assistants 2020; (33(4)):23-28 doi:10.1097/01.JAA.0000657160.48246.91.

    PMID: 32175940
  5. 5

    Hypermobile Ehlers Danlos for the Primary Care Provider.

    White L, Procknow SS

    Missouri medicine 2024; (121(4)):289-296.

    PMID: 39575079
  6. 6

    Genetic complexity of diagnostically unresolved Ehlers-Danlos syndrome.

    Vandersteen AM, Weerakkody RA, Parry DA, et al.

    Journal of medical genetics 2024; (61(3)):232-238 doi:10.1136/jmg-2023-109329.

    PMID: 37813462
  7. 7

    Diagnosis and Management of Hypermobility Spectrum Disorders in Primary Care.

    Atwell K, Michael W, Dubey J, et al.

    Journal of the American Board of Family Medicine : JABFM 2021; (34(4)):838-848 doi:10.3122/jabfm.2021.04.200374.

    PMID: 34312277
  8. 8

    Rationale and Feasibility of Resistance Training in hEDS/HSD: A Narrative Review.

    Zabriskie HA

    Journal of functional morphology and kinesiology 2022; (7(3)) doi:10.3390/jfmk7030061.

    PMID: 35997377
  9. 9

    Interdisciplinary pain rehabilitation for patients with Ehlers-Danlos syndrome and hypermobility spectrum disorders.

    Molander P, Novo M, Ringqvist Å, et al.

    Journal of rehabilitation medicine 2024; (56()):jrm12431 doi:10.2340/jrm.v56.12431.

    PMID: 38323531
  10. 10

    Cardiovascular manifestations of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders.

    Rashed ER, Ruiz Maya T, Black J, et al.

    Vascular medicine (London, England) 2022; (27(3)):283-289 doi:10.1177/1358863X211067566.

    PMID: 35000503
  11. 11

    A new insight on postural tachycardia syndrome in 102 adults with hypermobile Ehlers-Danlos Syndrome/hypermobility spectrum disorder.

    Celletti C, Borsellino B, Castori M, et al.

    Monaldi archives for chest disease = Archivio Monaldi per le malattie del torace 2020; (90(2)) doi:10.4081/monaldi.2020.1286.

    PMID: 32434316
  12. 12

    Mast cell activation disease and immunoglobulin deficiency in patients with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorder.

    Brock I, Prendergast W, Maitland A

    American journal of medical genetics. Part C, Seminars in medical genetics 2021; (187(4)):473-481 doi:10.1002/ajmg.c.31940.

    PMID: 34747107
  13. 13

    An overview of Ehlers Danlos syndrome and the link between postural orthostatic tachycardia syndrome and gastrointestinal symptoms with a focus on gastroparesis.

    Wu W, Ho V

    Frontiers in neurology 2024; (15()):1379646 doi:10.3389/fneur.2024.1379646.

    PMID: 39268060
  14. 14

    Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States.

    Estrella E, Frazier PA

    Disability and rehabilitation 2024; (46(4)):731-740 doi:10.1080/09638288.2023.2176554.

    PMID: 36772820
  15. 15

    The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective.

    Clark S

    Journal of patient experience 2025; (12()):23743735251333601 doi:10.1177/23743735251333601.

    PMID: 40290734
  16. 16

    Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.

    Yew KS, Kamps-Schmitt KA, Borge R

    American family physician 2021; (103(8)):481-492.

    PMID: 33856167
  17. 17

    Placing joint hypermobility in context: traits, disorders and syndromes.

    Morlino S, Castori M

    British medical bulletin 2023; (147(1)):90-107 doi:10.1093/bmb/ldad013.

    PMID: 37350130
  18. 18

    Initial description and evaluation of EDS ECHO: An international effort to improve care for people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

    Schubart JR, Bascom R, Francomano CA, et al.

    American journal of medical genetics. Part C, Seminars in medical genetics 2021; (187(4)):609-615 doi:10.1002/ajmg.c.31960.

    PMID: 34821464
  19. 19

    Heightened Revision Risk After Ankle Ligament Repair in Patients With Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder: A Propensity-Matched National Database Study.

    Dinh PV, Johnson JM, Reiad TA, et al.

    Foot & ankle international 2025; (46(11)):1231-1238 doi:10.1177/10711007251363246.

    PMID: 40954923
  20. 20

    Features that exacerbate fatigue severity in joint hypermobility syndrome/Ehlers-Danlos syndrome - hypermobility type.

    Krahe AM, Adams RD, Nicholson LL

    Disability and rehabilitation 2018; (40(17)):1989-1996 doi:10.1080/09638288.2017.1323022.

    PMID: 28482708
  21. 21

    Prevalence of ADHD and Autism Spectrum Disorder in Children with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome: A Retrospective Study.

    Kindgren E, Quiñones Perez A, Knez R

    Neuropsychiatric disease and treatment 2021; (17()):379-388 doi:10.2147/NDT.S290494.

    PMID: 33603376
  22. 22

    [Joint hypermobility: when to evoke Ehlers-Danlos syndrome]?

    P Germain D

    La Revue du praticien 2016; (66(4)):423-429.

    PMID: 30512708
  23. 23

    The role of gene encoding collagen secretion protein (SERPINH1) in the pathogenesis of a hypermobile type of Ehlers-Danlos syndrome.

    Junkiert-Czarnecka A, Pilarska-Deltow M, Bąk A, et al.

    Postepy dermatologii i alergologii 2023; (40(1)):102-106 doi:10.5114/ada.2022.124107.

    PMID: 36909907
  24. 24

    Subtle differences in autonomic symptoms in people diagnosed with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders.

    Martinez KL, Mauss C, Andrews J, et al.

    American journal of medical genetics. Part A 2021; (185(7)):2012-2025 doi:10.1002/ajmg.a.62197.

    PMID: 33826221
  25. 25

    Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory.

    Bennett SE, Walsh N, Moss T, Palmer S

    Disability and rehabilitation 2022; (44(18)):5231-5240 doi:10.1080/09638288.2021.1933618.

    PMID: 34101520

This page provides educational information about building a medical care team for Ehlers-Danlos Syndrome and does not constitute medical advice. Always consult your healthcare provider to coordinate the best treatment plan for your specific symptoms.

Stay up to date

Get notified when new research about Ehlers Danlos Syndrome (EDS) is published.

No spam. Unsubscribe anytime.