Watts Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders. It affects the production and function of collagen — the protein that gives structure and strength to joints, skin, organs, and blood vessels. When collagen doesn’t work properly, the body’s structural support system becomes unstable, fragile, and prone to damage.

EDS manifests differently from person to person, with a wide range of severity. In most cases, it involves some combination of connective tissue fragility, joint instability, and impaired healing across multiple systems — including the musculoskeletal, gastrointestinal, neurological, and vascular systems.

In my case, tissue fragility has been the defining feature — not the visible kind, but the kind that causes internal structural failures. Over time, this has included spontaneous cerebrospinal fluid (CSF) leaks, tendon ruptures, organ prolapse, spontaneous pneumothorax, poor surgical healing, and complications following otherwise routine procedures. Each incident on its own might have seemed like bad luck — until the pattern became impossible to ignore, and EDS was identified as the underlying cause.

Although it’s often dismissed as a condition that just makes people “extra flexible,” EDS can result in progressive, permanent damage when connective tissue breaks down under normal stress. For me, that has meant lifelong management of multiple impairments caused by systems that simply don’t hold together the way they should.

💥 Watts Causing It?

EDS is a genetic condition — you’re born with it. It occurs when changes in certain genes affect the production or structure of connective tissue, most notably collagen. Because collagen plays a crucial role in maintaining the integrity of joints, skin, organs, and blood vessels, faults in its structure can lead to widespread fragility, instability, and poor healing.

Diagnosis is clinical and often based on family history and a recognisable pattern of symptoms across multiple systems — particularly when those symptoms don’t respond as expected to standard treatment.

🩻 Watts the Diagnosis Process?

My diagnosis was based on a cEDS is diagnosed clinically, based on medical history, physical features, and patterns of symptoms across multiple systems. While some types of EDS can be confirmed through genetic testing, others — including the type suspected in my case — currently have no definitive genetic marker.

Diagnosis in this case was based on:

  • Documented spontaneous tissue damage, including tendon ruptures, organ prolapse, and CSF leaks without trauma
  • Evidence of connective tissue fragility, including impaired wound healing and skin features such as heel papules
  • Complications from otherwise standard procedures
  • A long history of multi-system issues that didn’t respond to conventional treatment

There was no single test that provided a definitive answer — but the pattern became clear once someone knew what to look for.

🩺 Watts the Management Team?

EDS is a multi-system condition that typically requires a multi-disciplinary approach. There’s no single specialist who treats all aspects of the condition, so effective management often involves coordination between:

  • GP – for day-to-day care and referrals
  • Geneticist – for diagnosis, classification, and ongoing genetic review
  • Rheumatologist & Immunologist – for systemic inflammation, immune involvement, and connective tissue monitoring
  • Cardiologist – for vascular involvement and autonomic dysfunction
  • Dermatologist – for diagnosis and management of skin involvement
  • Gastroenterologist – for management of gastrointestinal issues
  • Neurologist – for nerve pain, headaches, CSF leaks, and dysautonomia
  • Pain Specialist – for managing chronic and complex pain
  • Physiotherapist, Exercise Physiologist & Occupational Therapist – for pacing, strengthening, and joint protection strategies
  • Psychologist – for mental health support and pain coping strategies
  • Surgeons (Orthopaedic, Maxillofacial, Neurosurgical, Colorectal etc.) – when structural breakdown requires intervention

Effective EDS care often depends on clinicians who understand the condition — or are at least willing to learn. Coordination, communication, and persistence are key.

🧩 Related Conditions

Many of the other conditions I’ve been diagnosed with are known to overlap with EDS. If you’d like to understand more about how they connect — or how they’ve shown up in my life — you can explore:

…or head over to my blog for stories, frustrations, and the sometimes ridiculous realities of living with chronic illness — where I try to Sparkle, Swear, Smile, and Survive through it all.

You can also visit the Helpful Links page for resources and organisations I’ve found useful along the way.

Disclaimer:
I’m not a doctor — just someone with a lot of medical letters on my file and a few too many hospital wristbands. Everything shared on this site comes from my personal experience living with complex chronic conditions. It’s not medical advice, and it shouldn’t replace professional guidance. Always speak to your healthcare team before making any treatment decisions (especially if it involves sparkles, spreadsheets, or ice cream therapy).

© WattsWithPain 2025