Bending Boundaries

Meet the women with EDS helping to shape the future for others

- Amy Fogarty

ACCEPTING CHRONIC ILLNESS requires courage. But for three exceptional women, courage can be found in their refusal to accept the status quo. Be it through movement, charity, or science, each is driven by a relentless determination to improve the prospects of those who share their condition, Ehlers-Danlos syndrome (EDS)-a group of 13 heritable connective tissue disorders.

Jeannie Di Bon is a firm believer that movement heals. Following a 35-year quest for answers, a physical therapist was able to connect the dots of her symptoms by asking just a handful of questions. Finally, armed with an explanation, the diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS) came as more of a relief than a surprise. Since qualifying as a pilates instructor in 2008, Di Bon had seen the condition manifest in various ways among her clients.

Thought to be the most common of 13 known subtypes of Ehlers-Danlos syndrome (EDS), the hypermobile connective tissue disorder is most often associated with joint hypermobility, instability, chronic pain, and dislocations. However, those impacted can face multisystemic symptoms and co-morbidities, such as gastrointestinal, neurological, and vascular disturbances, presenting on a wide spectrum of severity.

Despite yielding positive results, as Di Bon's work with hEDS clients increased, she began to notice gaps in her teaching, and set out to address them: "That's why I started to look more into the mind, into the breath, and relaxation... and modify the exercises so that they were safe and suitable for somebody who is maybe feeling very unstable."

Through clinical research, coupled with training in biomechanics, anatomy, neuroscience and lifestyle medicine, the 52-year-old developed a new approach coined the Integral Movement Method. All this knowledge culminated in an app to address hypermobility, EDS, and chronic pain.