Quick Summary
Many people with EDS wait 7 to 10 years for a diagnosis. Symptoms span multiple systems and look unrelated. A unified history helps clinicians see patterns earlier.
Why the delay happens
Ehlers-Danlos syndromes are heritable connective tissue disorders that affect collagen throughout the body. Because collagen is everywhere, symptoms can show up in many systems and at different times.
- Joint hypermobility with sprains, dislocations, and chronic pain
- Skin hyperextensibility and slow wound healing
- Vascular fragility in severe subtypes
- Comorbid issues such as POTS, gastrointestinal dysmotility, or mast cell activation
People often see orthopedists, dermatologists, cardiologists, gastroenterologists, and rheumatologists before anyone connects the dots. Hypermobile EDS has no single genetic test, so diagnosis relies on clinical criteria.
Patient experiences
Stories from the EDS community in Australia and the Ehlers-Danlos Society describe long, confusing journeys where symptoms are dismissed or treated in isolation.
- Multiple specialists over years before an answer
- Labels like anxiety or fibromyalgia without a unifying cause
- Missed chances to manage pain, joints, and comorbidities earlier
How Aether can help
Medical histories are scattered across clinics and portals. Aether brings reports, imaging, prescriptions, and events into one place so patients and clinicians can see a single story.
- Track symptoms and diagnoses over time
- Spot patterns across specialties at a glance
- Bring a structured health timeline to appointments
Related reading
FAQ
What is Ehlers-Danlos Syndrome?
A group of heritable connective tissue disorders affecting collagen that can lead to joint hypermobility, skin changes, and tissue fragility. See the EDS Society overview.
Why does diagnosis take 7 to 10 years?
Symptoms span systems and look unrelated. Many people see several specialists before someone recognizes the pattern, especially in hypermobile EDS.
Is there a genetic test for hEDS?
Not yet. Some subtypes have known variants, but hEDS is a clinical diagnosis after ruling out other causes.
Which specialists manage EDS?
A multidisciplinary team that may include rheumatology, genetics, cardiology, gastroenterology, pain medicine, and physiotherapy.