3 Women with EDS who are shaping the future

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 are 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 amongst her clients.

Jeannie Di Bon

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 multi-systemic 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 of this knowledge culminated in an app designed to address hypermobility, EDS, and chronic pain.

“One of the things about The Zebra Club, is it’s not just a collection of exercise videos. It’s become this whole network of support for people where they can really feel validated.”

Jeannie Di Bon

Having experienced her own difficulties navigating the healthcare system, Di Bon reflects on why so many with EDS carve out a vocation linked to the disorder: “I think it happens because we go through such a personal struggle ourselves to find information, to figure it out. For me personally, I just want to share that.”

The Wimbledon native is constantly seeking a greater understanding of the body, currently studying for an MSc in Pain Management alongside her multi-hyphenate lifestyle as an author, movement therapist, app founder, and award-winning community champion. But, through her six principles of pain-free movement, Di Bon offers a sincere message of hope.

“We can always change something that would make your life better. Even if it’s the tiniest thing. I work with people who are bed bound, who have had to give up work, who are house bound, and we are working together to make their lives more fulfilling, to give them a better quality of life.”  

This collaborative approach is at the core of Lara Bloom’s role as President and CEO of the global charity, The Ehlers-Danlos Society. “It’s really bringing together anyone that is impacted by these conditions, but also the health professionals that care for them,” she says.  

Having left photography in 2009 due to worsening hEDS symptoms, a chance encounter with an affected parent re-routed the course of her life, bringing the 42-year-old to a career in leadership and advocacy. Although her own experience led her to the position, she insists it isn’t the reason she continues to strive for progress. “I do it because I love being a CEO of a non-profit, and I love running a non-profit with a cause that means so much to me.”  

Lara Bloom, photo by Ross Ferguson

However, when facing long hours, frequent travel, and occasional harsh scrutiny on social media, what drives her through the fatigue is: “remembering what it was like to be that child, undiagnosed. To not know any answers, to not have met anyone else with the condition.”

Arguably more so, Bloom has found motivation outside her own experience. “The people are the reason, and the stories I’ve heard, and the amount of work there is still left to do. That’s what drives me.”  

While that work includes a large-scale genetic research study, re-evaluation of the current diagnostic criteria, and the hosting of international annual learning conferences, one change is much cheaper to address. Reporting a host of seemingly unrelated and often generic complaints, such as fatigue or pain, patients with all types of EDS are often dismissed by health professionals as hypochondriacs.  

Bloom is keen to address this injustice, especially given the average diagnosis time for EDS is 10-12 years. “If doctors could just take the time to hear, listen, believe, and validate what people are experiencing, that’s half the battle right there.”   

Lara Bloom, The Ehlers-Danlos Society

Of the immediate future, the Hertfordshire-based CEO believes the next two to five years will yield significant changes. Her hopes include: “Awareness, education, and making that diagnosis a little bit more black and white, instead of so grey. If we could have some genetic testing that could help, that would go a long way.”   

Such advancements are already in the works, and are a source of great pride for Bloom. Science aside, her aspirations are as lofty as they are humble. “I would like for our community, and for all those impacted by EDS and HSD (hypermobility spectrum disorders) to get to a stage where people are diagnosed at the point when their symptoms begin, and those symptoms managed and cared for locally and long term.”

Sharing similar ambitions is a post-doctoral scholar working in the Norris lab at the Medical University of South Carolina (MUSC). Not many 26-year-olds can profess to be concerned with legacy, but Cortney Gensemer is already leaving her mark.

After an active childhood, Gensemer was diagnosed with hEDS as an undergraduate, following a bout of serious injuries. Relieved to have an explanation for her symptoms, the news also altered her career trajectory, pushing her away from medicine, and towards research.

A fortuitous meeting only days into her PhD programme in 2018 led Gensemer to an extraordinary opportunity. Shocked to hear the genetic mutation responsible for hEDS was yet to be found, esteemed professor, Russell “Chip” Norris, PhD, offered the young scientist a rotation in his lab. His challenge to her: find the responsible gene.  

Cortney Gensemer in the lab

Starting as a side project, the quest swiftly became the focus of Gensemer’s PhD dissertation. And beyond all expectations, one genetic mutation has already been identified, the findings of which are expected to be published shortly. Impressive enough. Yet, the scholar has greater ambitions of improving diagnosis through the identification of biomarkers to be used in blood tests. “Obviously, the big goal is treatment, and working on understanding those pathways, and how we can try to treat the disease,” she says.

The Charleston resident is keen to clear the path for others to follow in her footsteps. An internship program hosted by the Norris lab each summer provides opportunities for young people with hEDS to gain scientific experience, and participate in the effort to advance research in their own condition. Awarded funding by a foundation for the next three years, Gensemer was overcome by the decision to name the internship after her. “Getting my PhD was awesome, but knowing that what I was doing was impactful enough that they wanted to fund it and name it after me was even cooler.” 

The purpose of the program is clear. “Not only does it give them an opportunity to work on EDS, but it also shows them that their disability isn’t going to limit them from working in a lab.” Offering accommodations, such as accessible doors, and ergonomically designed pipettes, the lab are eager to demonstrate: “even though they might be limited in some capacity…if you make accommodations in the lab, you can do research, you can get a PhD.” 

Understanding this isn’t the case for many, all three trailblazers are gracious in acknowledging their unique privileges, such as enhanced knowledge of hEDS, access to informed practitioners, financial capability, and emotional support. But each embodies the importance of patient representation in turning the tide against a previously neglected disorder.  

Gensemer says it best: “I think with patients being involved, it keeps that momentum going, because the drive, and the passion, and the interest is obviously there.” 

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