Zebras, The Most Important Decision You'll Make

 

Choosing Your hEDS Care Team; Why the right PCP and specialists can transform your healthcare journey

Dear Zebras,

If you're reading this, you probably already know that navigating healthcare with hypermobile Ehlers-Danlos Syndrome (hEDS) isn't just challenging,it can feel like trying to solve a puzzle while someone keeps moving the pieces. After years of misdiagnoses, dismissed symptoms, and medical gaslighting, many of us finally receive our hEDS diagnosis only to face an even more daunting question: Now what?

The answer lies in one of the most critical decisions you'll make as an hEDS patient: assembling the right healthcare team. This isn't just about finding doctors who believe you (though that's essential). It's about building a coordinated network of providers who understand the complex, interconnected nature of hEDS and can work together to provide comprehensive care.

Today, I'm sharing insights from my upcoming book The Hypermobile EDS Survival Handbook about how to strategically choose your PCP and specialists, not just any providers, but the right ones who can truly support your journey.

The Foundation: Your Primary Care Provider

Your PCP isn't just another doctor, they're your healthcare quarterback, advocate, and coordinator. In the hEDS world, this relationship becomes even more crucial. Here's what to look for:

The Non-Negotiables:

 • Believes your symptoms are real (sounds basic, but we know it's not)

 • Understands that hEDS is a systemic condition, not just "being flexible"

 • Willing to coordinate with multiple specialists without ego or territorial behavior

 • Open to learning about conditions they may not have encountered before

 • Respects your expertise about your own body

Red Flags to Avoid:

 • Dismisses your research with "Don't believe everything you read online"

 • Refuses to provide referrals to specialists familiar with hEDS

 • Treats each symptom in isolation without considering systemic connections

 • Suggests your problems are "just anxiety" or "you're too young for these issues"

 

The Interview Process:

When meeting potential PCPs, come prepared with specific questions:

 • "How familiar are you with hEDS and its systemic manifestations?"

 • "What's your approach to coordinating care with multiple specialists?"

 • "How do you handle situations where patients present with complex, multi-system symptoms?"

 • "Are you comfortable managing referrals to EDS-knowledgeable providers?"

Remember: You're interviewing them, not the other way around.

 

Building Your Specialist Dream Team

hEDS rarely travels alone. The average patient develops a constellation of related conditions, POTS, MCAS, gastroparesis, chronic pain, autonomic dysfunction, and more. Each requires specialized knowledge, but they must work together cohesively.

The Core Specialists to Consider:

Rheumatologist - Often your first specialist referral, but choose wisely. Look for those who specifically mention connective tissue disorders in their practice, not just arthritis and autoimmune conditions.

Geneticist - Even though hEDS doesn't have a genetic test yet, a good geneticist can rule out other EDS types and help with family planning considerations.

Cardiologist - Preferably one familiar with POTS and other forms of dysautonomia. Ask about their experience with tilt table testing and autonomic function studies.

Gastroenterologist - hEDS affects the entire GI tract. Find someone who understands the connection between connective tissue disorders and motility issues.

Physical Medicine & Rehabilitation (PM&R) - These specialists can be game-changers for pain management and functional improvement.

Pain Management - Look for providers who offer multimodal approaches beyond just medications.

 

The Specialist Vetting Process:

1. Start with the EDS Society's provider directory, but don't stop there

2. Check local EDS support groups for patient recommendations

3. Review publications and research - specialists active in EDS research often provide cutting-edge care

4. Schedule consultation appointments before committing to treatment

5. Ask about their collaborative approach - do they communicate with your other providers?

The Coordination Challenge

Here's where many hEDS patients stumble. You might find an excellent rheumatologist and a knowledgeable cardiologist, but if they don't communicate, you're left managing conflicting treatment plans and redundant testing.

Creating Care Coordination:

Designate a Care Coordinator - This could be your PCP, a specialist who takes ownership, or even you with organized systems.

Use Technology - Patient portals, shared medical records, and care coordination apps can help providers stay connected.

Regular Team Meetings - Some practices offer case conferences for complex patients. Ask if this is possible.

The Medical Summary - Create a comprehensive document summarizing your diagnoses, medications, allergies, and treatment history. Update it regularly and bring copies to appointments.

 

The Reality Check: When Perfect Isn't Possible

I know what some of you are thinking: "This sounds great, but I live in a rural area/ have limited insurance/ can't travel to specialty clinics."

Here's the truth from someone who's been there: Perfect care coordination is aspirational, but good care coordination is achievable.

 

Practical Strategies for Real-World Constraints:

Start with One - Find one provider who "gets it" and build from there. Even a single advocate in the system makes a difference.

Telemedicine - Many EDS-knowledgeable specialists now offer virtual consultations, expanding your options beyond geographic limitations.

Educational Partnerships - Sometimes the best approach is finding a willing provider and helping them learn. Bring research articles, diagnostic criteria, and treatment guidelines.

Patient Advocacy - Join local support groups, connect with other patients, and share provider recommendations. The hEDS community is incredibly resourceful.

 

The Investment That Pays Off

Building the right care team requires significant upfront investment, time, energy, and often money. You might travel farther, pay out-of-network costs, or spend hours researching providers. But the payoff is transformative:

 • Faster diagnosis of related conditions

 • Coordinated treatment plans that address root causes, not just symptoms

 • Fewer medical emergencies from overlooked complications

 • Better quality of life through comprehensive management

 • Validation and support from providers who understand your experience

 

Your Action Plan

1. Audit your current care team - Who's working well? Who needs replacing?

2. Research EDS-knowledgeable providers in your area and within traveling distance

3. Schedule consultation appointments with potential new providers

4. Create your medical summary document

5. Join patient communities for ongoing provider recommendations and support

Remember: You deserve providers who see you as a whole person, not a collection of confusing symptoms. You deserve to be believed, supported, and actively involved in your care decisions.

The journey to finding the right care team isn't easy, but it's one of the most important investments you can make in your health and future. Every step you take toward better care coordination is a step toward better quality of life.

Stay tuned for next week's newsletter, where I'll share specific questions to ask potential providers and red flags that signal it's time to find someone new.

 

Your Turn: What strategies have worked for you in building your hEDS care team? Share your experiences in the comments, your insights could help fellow zebras avoid the pitfalls you've encountered.

This newsletter is adapted from my upcoming book, "The Hypermobile EDS Survival Handbook." For more detailed guidance on provider selection, care coordination strategies, and patient advocacy, subscribe for updates on the book's release.