If you’re living in Illinois and dealing with the life-altering symptoms of Ehlers-Danlos Syndrome (EDS), you already know how complex this condition can be. Getting diagnosed is only the beginning — the real challenge comes in finding the right medical team that understands the full scope of EDS and how it affects your body, mind, and daily life.
Dr. Sarah Diekman, founder of Diekman Dysautonomia, knows this challenge from both sides: as a board-certified physician and as someone living with a chronic illness herself. Her practice offers a rare blend of clinical expertise, lived empathy, and functional strategies for managing conditions like EDS and its common comorbidities — including POTS, Mast Cell Activation Syndrome (MCAS), and Long COVID.
So how do you find the right Ehlers-Danlos specialist in Illinois? Let’s break it down — step by step.
Understanding Ehlers-Danlos Syndrome: Why You Need a Specialist
EDS is not just about being “hypermobile” or “flexible.” It’s a group of connective tissue disorders that affect joints, skin, blood vessels, digestion, the nervous system, and more.
This makes EDS:
- Multisystemic — It impacts many parts of the body.
- Often misunderstood — Many doctors aren’t trained to recognize or treat it.
- Frequently misdiagnosed or underdiagnosed — Especially in its rarer forms.
That’s why finding the right specialist is critical. A good EDS doctor will:
- Understand the entire clinical picture, not just isolated symptoms
- Screen for related conditions like POTS and MCAS
- Help coordinate care across specialties
- Create a long-term management plan, not just offer short-term fixes
Step 1: Know What Type of Specialist You Need
Because EDS affects multiple systems, you may need a team of providers, not just one. Here’s who to consider:
Primary Specialist: Occupational & Environmental Medicine Physician
Example: Dr. Sarah Diekman
Trained to understand how health conditions like EDS interact with your daily function, work, and environment. Focused on real-life outcomes, not just test results.
Neurologist or Autonomic Specialist
To address dysautonomia-related symptoms like fainting, fatigue, or POTS.
Rheumatologist or Geneticist
To help evaluate or confirm, depending on EDS type — not all forms have a definitive genetic test.
Allergist or Immunologist Familiar with MCAS
For patients with allergic-type symptoms, rashes, or unexplained inflammation.
Physical Therapist
Trained in hypermobility-safe rehabilitation and stabilization.
At the clinic led by Dr. Sarah Diekman, the focus is not on over-specialization but on collaborative care that sees the whole patient. She helps patients navigate these overlapping conditions with a centralized, coordinated approach.
Step 2: Look for Lived Experience + Clinical Credentials
Credentials matter — but empathy matters just as much.
Dr. Sarah Diekman isn’t just an MD. She also holds a JD, MS, MPH, and is a Fellow of the American College of Legal Medicine (FCLM). She completed her residency at Johns Hopkins in Occupational and Environmental Medicine. But what sets her apart is her lived experience with a chronic illness (POTS).
She understands what it feels like to be dismissed by doctors, to have invisible symptoms, and to search endlessly for answers.
This unique combination means patients with EDS at her clinic aren’t just treated — they’re heard, believed, and guided with insight and compassion.
Her legal background also supports patients dealing with disability paperwork, school or workplace accommodations, and medical-legal complexities — areas where many providers have limited insight.
Step 3: Consider Location — and Reach
If you’re in Illinois, location matters — but so does access.
Dr. Sarah Diekman’s clinic is based in Oakland, Maryland, but she offers telemedicine consultations to Illinois residents seeking expert EDS care.
Telehealth here doesn’t mean impersonal — it means empowered access and care, where you are.
Many EDS patients travel across states (and even countries) to get properly evaluated. Telehealth makes this more feasible than ever before — and Dr. Sarah Diekman’s clinic is designed for secure, in-depth virtual visits that don’t compromise on quality.
Step 4: Know What Questions to Ask Before Booking
Here are questions to ask when evaluating a specialist for EDS:
- Do you have experience treating Ehlers-Danlos Syndrome and its comorbidities (POTS, MCAS, etc.)?
- What’s your approach to diagnosing and managing chronic pain and fatigue?
- Will you coordinate care with other specialists (cardiology, neurology, GI)?
- Do you offer support for work, school, or disability accommodations?
- Do you provide individualized care plans or use a standard protocol?
At Dr. Sarah Diekman’s clinic, the answer to these questions is a resounding “yes.” Care plans are built around your goals — whether that’s returning to school, managing work stress, or regaining the ability to travel and enjoy life again.
Step 5: Avoid Red Flags
Not every provider who claims to treat EDS is a good fit. Be cautious of:
- Clinics that dismiss your symptoms as psychological without thorough evaluation
- Over-reliance on supplements or experimental protocols without peer-reviewed backing
- Providers who offer one-size-fits-all treatment plans for complex multisystemic illnesses
- Lack of knowledge about coexisting conditions like POTS or MCAS
Dr. Sarah Diekman’s approach emphasizes evidence-based medicine, patient-centered care, and ongoing education — ensuring you’re not stuck in a plan that doesn’t work for you.
Step 6: Education and Empowerment
One of the best signs of a good specialist is their commitment to patient education.
At Dr. Sarah Diekman’s clinic, you’re not just handed a diagnosis — you’re taught how to understand your body, monitor symptoms, and make adjustments to support long-term health.
The clinic prioritizes:
- Breaking down complex science into language you can understand — and act on
- Offering tools, not just treatments: pacing strategies, ergonomic changes, dietary support, and mental health resources
- Encouraging realistic goal setting and celebrating progress
Step 7: Read Testimonials and Patient Experiences
When searching for an EDS specialist, real patient stories can be the most powerful insight you’ll find.
Patients at Dr. Sarah Diekman’s clinic frequently mention:
- Feeling “finally heard” after years of dismissal
- Seeing measurable improvements in fatigue, function, and mental health
- The compassion and precision in Sarah Diekman’s approach
- The convenience of virtual care that still feels personal and thorough
Final Thoughts
Living with Ehlers-Danlos Syndrome isn’t easy — but finding a doctor who understands it shouldn’t be a battle. If you’re in Illinois and looking for expert, compassionate, and practical care, Dr. Sarah Diekman and her team may be exactly what you’ve been searching for.
With lived experience, advanced training, and a focus on functional outcomes and real-life goals, Dr. Sarah Diekman isn’t just treating EDS — she’s helping patients reclaim their futures.
Ready to Take the Next Step?
Call 833-768-7633 or become a patient today and begin your journey toward better care — from a doctor who truly understands.
