About Ehlers-Danlos Syndrome

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndromes (EDS) are a group of 13 inherited connective tissue disorders caused by defects in collagen and other connective tissue proteins. Collagen is the most abundant protein in the body, providing structure to skin, bones, blood vessels, and virtually every organ system. When collagen doesn't work properly, it can affect nearly every part of the body.

EDS affects an estimated 1 in 5,000 to 1 in 20,000 people, though hypermobile EDS (hEDS) — the most common type — may be significantly more prevalent. Many patients wait years or even decades for a correct diagnosis due to limited awareness among healthcare providers.

Common Types

• Hypermobile EDS (hEDS) — The most common type, characterized by joint hypermobility, chronic pain, and frequent joint dislocations or subluxations.
• Classical EDS (cEDS) — Marked by extremely stretchy, fragile skin that bruises easily and heals with distinctive scarring.
• Vascular EDS (vEDS) — The most serious type, involving fragile blood vessels and organs that can rupture without warning.
• Kyphoscoliotic EDS — Features severe muscle weakness at birth and progressive curvature of the spine.

Common Symptoms and Related Conditions

• Joint hypermobility and frequent dislocations
• Chronic widespread pain
• Fatigue and sleep disturbance
• Skin that is soft, stretchy, or bruises easily
• POTS (Postural Orthostatic Tachycardia Syndrome)
• MCAS (Mast Cell Activation Syndrome)
• Gastrointestinal dysfunction
• TMJ disorders
• Pelvic floor dysfunction
• Anxiety and depression

Why Finding EDS-Knowledgeable Providers Matters

Because EDS affects multiple body systems, patients often need care from providers across many specialties. The challenge is finding providers who understand how EDS connects these seemingly unrelated symptoms. A physical therapist who doesn't understand hypermobility may prescribe exercises that cause further injury. A surgeon unfamiliar with EDS may not account for fragile tissue and poor wound healing.

This directory exists to connect EDS patients with providers who have specific experience treating connective tissue disorders, reducing the time patients spend searching for knowledgeable care.

About This Directory

The EDS Specialists Directory includes 1560+ healthcare providers across 21 specialties and 48 states. Listings are compiled from multiple sources including provider directories, professional organizations, and patient community recommendations.

This directory is for informational purposes only and does not constitute medical advice. We encourage patients to verify provider credentials and discuss their specific needs directly with any provider before scheduling an appointment.

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• Search all providers by name, location, or specialty
• Browse by category to find the right type of specialist
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