Understanding Diane’s diagnosis
Diane was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in her late 40s, after years of joint problems and surgeries. Before her diagnosis, she was a fit, active athlete who regularly practiced and competed in Taekwondo. She had attributed many of her injuries and operations to the demands of training and competition.
Over the years, she underwent 38 operations, including joint replacements. Her eventual diagnosis gave us a different perspective on that history and the possible contribution of an underlying connective tissue disorder.
When hand and hip replacement surgeries required further operations, her doctors began investigating more closely. Following specialist assessment, a geneticist diagnosed her with hEDS.
Although a geneticist can diagnose hEDS, the diagnosis is currently based on clinical assessment rather than a confirmatory blood or genetic test. Testing may help investigate or exclude other conditions. The Ehlers-Danlos Society: diagnosis
The news was difficult, but it helped us understand some of the challenges Diane had been facing. Over time, we learned to adapt. She needed crutches that placed less strain on her hands, daily hand and finger splints, and hip braces when needed. Ordinary crutches had caused significant problems for her hands.
What is HSD?
Hypermobility spectrum disorders (HSD) are related conditions involving symptomatic joint hypermobility that is not explained by another diagnosis. HSD is not a new name for hEDS, and it should not automatically be considered a milder condition. Both can substantially affect daily life and require care tailored to the individual. The Ehlers-Danlos Society: HSD
Although Diane’s story concerns hEDS, we hope that some of our experiences will also be useful to people living with HSD.
When digestive symptoms became more severe
In the years that followed, Diane developed increasingly severe digestive and abdominal symptoms, including gut pain and rapid weight loss. Some symptoms had been present since childhood but had become much harder to manage.
Despite specialist consultations and extensive investigations, her condition continued to deteriorate, eventually reaching the crisis described on our About page.
Digestive problems can occur alongside hEDS and HSD, but their causes vary. Having either diagnosis does not establish that symptoms are caused by food allergy, and new or worsening problems should be assessed on their own merits.
What helped us
While her doctors continued investigating, I searched widely for information that might help. I repeatedly encountered the idea of managing digestive symptoms through dietary adjustments.
We began looking closely at what Diane ate and drank and how her symptoms varied. Changes to her food and fluid intake were followed by a substantial improvement. We also noticed a difference when we changed the water she drank, although we cannot establish why that seemed to help or whether others would experience the same result.
These changes helped us manage her day-to-day symptoms. They did not cure her underlying condition or establish the cause of every reaction.
Since that difficult weekend, we have continued refining our approach while maintaining medical follow-up. Over time, we have seen improvements in her health and her ability to manage eating and drinking. It remains an ongoing process, but today we are managing much better.
Sharing our experience
People with hEDS and HSD can have very different symptoms, needs, and responses to treatment. Our experience is one example, rather than a plan that will work for everyone.
The zebra symbol used by the EDS and HSD community comes from a medical teaching analogy that encourages doctors to consider common diagnoses first. It reminds us that less familiar diagnoses must also be considered. Its different stripe patterns also represent the diversity of people’s experiences. The Ehlers-Danlos Society: why the zebra?
We share our observations to help readers ask questions, recognize patterns, and discuss possible adjustments with their healthcare team. Substantial dietary changes should be planned with a clinician or registered dietitian, especially when weight loss, dehydration, or a limited diet is already a concern.
We are not medical or nutrition professionals. What helped Diane may not help someone else, and some of our observations remain unexplained. Our hope is that sharing them will offer practical ideas, encouragement, and a starting point for informed conversations about care