If you suspect you have Ehlers-Danlos Syndrome (EDS), consulting a range of specialists is crucial due to the multifaceted nature of the condition and the parts of the whole body that can be impacted, not to mention the nature of connective tissues being everywhere in the body. The best advice we ever received was “Treat the Worst First,” in reference to attacking the worst symptom you’re dealing with at the time as your priority. It could be pain, or maybe the need for stabilizing surgery. Whatever it is for you, focus on one thing at a time, or you will get overwhelmed. And your worst will change – sometimes daily, sometimes monthly—and it definitely will over time as you learn to manage some things better, get injured, or flare up other systems and need to reset again. Expect it to change, and you will need to adjust your course, and find a new specialist.
Here’s a list of suggested types of doctors and specialists to consider:
1. Geneticist
- Why: To perform genetic testing and confirm the diagnosis of specific types of EDS, except for hypermobile EDS, which currently lacks a genetic marker. Geneticists can also provide family counseling. Google Dr. Clair Francomano to start your search, she’s booked for years.
- Resource: American College of Medical Genetics and Genomics
2. Rheumatologist
- Why: To manage joint hypermobility, arthritis, and other musculoskeletal symptoms commonly found in EDS. Many rhematologists are not trained in hypermobility or connective tissue diseases, so do not be surprised if you are dismissed. Keep trying.
- Resource: American College of Rheumatology
3. Cardiologist
- Why: Especially for vascular type EDS, to monitor and manage potential cardiovascular complications such as arterial aneurysms and valvular heart disease. It is also very critical to evaluate if you have any sort of autonomic dysfunction, such as dysautonomia, Postural Orthostatic Tolerance syndrome (POTS) common to co-exist with EDS. Try Googling Dr. Hasan Abdallah at Johns Hopkins to get started. Pack your patience. Or check out the wide variety of resources from the nonprofit Dysautonomia International, including their find a doctor directory.
- Resource: American Heart Association
4. Gastroenterologist
- Why: To address gastrointestinal issues very common in EDS such as dysmotility, reflux, gastroparesis, and irritable bowel syndrome that are often seen in these patients. Try Googling Dr. Leonard Weinstock as he is a gasto and EDS/MCAS expert.
- Resource: American College of Gastroenterology
5. Physical Therapist
- Why: To develop a tailored exercise regimen that strengthens muscles without stressing joints, and to manage chronic pain effectively. This will probably be a life-long therapist you need to have on your care team. Definitely go to someone who understand hypermobility or you can get injured. For resources from Leslie Russek, a PT who also has EDS, check out the vast information and her Hypermobility 101 free 12 week course program here and download her highly-informative handouts here. We think she is a gift to our community as she gathers information and collects into easy to understand resources.
- Resource: American Physical Therapy Association
6. Pain Specialist
7. Dermatologist
8. Orthopedist
Importance of Broader Care Options
- Holistic Care: EDS affects multiple systems, and symptoms can overlap between different specialties. Coordinated care ensures all symptoms are addressed comprehensively.
- Prevent Misdiagnosis: Given the complexity and variability of EDS symptoms, consulting multiple specialists reduces the risk of misdiagnosis.
- Optimized Management: Integrated care allows for the optimization of treatments that can affect multiple symptoms across different body systems.
Navigating the healthcare system with EDS can be challenging, and building a team of diverse specialists who communicate with each other can significantly enhance the management of the condition. Also, collecting your own medical records and information from patient portals or on paper in the dreaded binder becomes important when they do not communicate with each other and the responsibility falls on the patient. Doctors like data, so bring it with you.
Helpful Resources in Appointment Preparation
If you need help determining how to prepare for doctor appointments when you are a complex and chronically ill patient with EDS, see this guidebook outlining how to prioritize your few minutes with the provider. Also read the Chronic Pain Partner’s guide written by Karina Sturm on Mastering Appointments with EDS. If you need help collecting the data to your care team, feel free to use these free downloadable and editable medical templates. There’s also a new promising free app, called Guava, to track symptoms that claims it will help you identify patterns. We’re testing it now. They promote it as ‘the best tool to manage EDS.’ Since there are no tools out there yet, it’s not a very bold claim, but check it out anyway.
