Advocacy & Awareness

CHRONIC PAIN | DISABILITY | INCLUSION | SPORT |

“Some medical students reveal their disability experiences for collective benefit and to counter stigma. These strategic acts, political disclosures, resist ableist conceptions of disability in medicine.” -Jain, 2018, p. 1

Person posing in front of an indoor climbing wall

My Story

I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in 2021, 15 years after symptom onset. My pain started when I was 13, initially forcing me to quit soccer. The musculoskeletal issues became widespread and accumulated, as did the activities I was forced to give up.

EDS has taken a lot of things from me over the years: friendships, playing music, running, big adventure days, anything repetitive, anything dexterous, and much of the time, climbing. I find new activities to replace the ones I lost, only to have to give them up, too. I’ve had five major surgeries since 2018 with 17 rounds of prolotherapy and counting, but I remain #zebrastrong.

My medical journey consisted of many misdiagnoses and an overall lack of answers to explain issues that seemed too coincidental not to be connected. I took up climbing after I could no longer play music, leading to me realize that representation is important and everybody deserves the benefits of outdoor adventure and sport.

I hope that in sharing my disability others will be able to advocate for and receive the care they need. Furthermore, I hope for all abilities to see that adventure is possible, no matter how small. You can follow me adventuring outdoors and behind-the-scenes with hEDS on Instagram through @zebra.in.boots.

Biggest day out scrambling in many years! Maybe next year will be the year I finally repeat Mount Temple and there is hope after all. 🦓 #ehlersdanloswarrior

I shed a few tears on this excursion. Once, when I was scared fishless from exposure (#moun

Loving where I live and sad to leave again! I'm off to Vancouver Island soon for 5 weeks of housesitting and hunkering down to focus on my candidacy exam papers. Hopefully my body doesn't self-destruct too much on the drive out there🤞🏻#edslife #gra

A wee taste of my academic life. Full guest lecture recording available on my YouTube channel (@jenisefinlay).

#disabledpeoplearehot

Fifth annual pumpkin hike complete, and the fourth with friends 🧡

I have hEDS, of course I'm the rope gun when my parents visit... No falls today, yet fall fun was had. #oldpersonclimbingclub #calcanealrepair

In the past, I'd beat myself up if I didn't lead climb everything I might be able to. It wasn't even an option in my mindset then.

If you've been following me long enough, you know what happened next. Multiple surgeries, prolotherapy, and an Ehlers-

I often forget how much pain inhibits strength. Last Sunday, we did Midnight Peak. Thanks to a cold I caught a few weeks ago, plus EDS nonsense (being sick exacerbates my EDS symptoms), it felt stupid hard.

Wednesday, we did the Heart Mountain Loop

Went for a motorcycle ride today and my 'new' (used) size medium motorcycle pants I bought to replace my too-small (also size medium) motorcycle pants now make me feel like sausage being restrained by casing. Yes, bodies fluctuate. But I also know I'

Yesterday marked one year since I came home from the hospital after falling 30 feet while multipitch climbing. To celebrate, I climbed Takkakaw Falls and even led the final pitch. 🎉 #calcanealrepair

It was a big day and said foot gave me grief, bu

Not quite a year after I shattered my calcaneus (heelbone), I went backpacking in the middle of nowhere and managed three first recorded ascents with ye olde fæder. My foot was the least painful thing about my body - hooray (I think)! #chronicp

I participated in a hypermobile Ehlers-Danlos syndrome (hEDS) and cognition study yesterday, so here's a photo @heatherchapin.photography took of me last year.

EDS is still under-researched, so I'm always willing to be on the other side of the cons

Wee, more prolotherapy! 💉

Thankfully, this is the last round for at least three months since "it needs time to cook," according to my practitioner. I will not lament becoming a tin person every three weeks for days after each (expensive)

“It’s important to me to be open about my life with Ehlers-Danlos syndrome (EDS), because if I’m not, how will awareness and understanding around it improve?”

Woman with prosthetic leg and crutches hiking in forest with male companion

“If you don’t think representation matters, you’re probably well-represented. ”

— Bernice King

What is Ehlers-Danlos Syndrome?

The Ehlers-Danlos syndromes (EDS) are heritable connective tissue disorders, all of which result in joint hypermobility, skin hyperextensibility, and fragile tissue. In EDS, the genes that manufacture and/or process collagen are affected, resulting in connective tissue that doesn’t function properly. Taking collagen supplements won’t help, and here’s why: https://www.ehlers-danlos.com/myths-and-facts-about-eds-and-hsd/.

The most abundant protein in the body, collagen is everywhere to support and provide structure to organs and other tissues like bone, ligaments, tendons, skin, and blood vessels. My joints are not supported properly by my ligaments. As a result, I have widespread arthritis and frequently experience subluxations, muscle and ligament tears, and other soft tissue injuries. Furthermore, because my collagen is defective, I tend to heal more slowly, improperly, or in some cases, not at all.

There are 13 known subtypes of EDS. I have the most common type, hypermobile Ehlers-Danlos syndrome (hEDS), which affects approximately 1 in 3,100 - 5000 and accounts for 90% of all EDS cases. This is also the only type of EDS in which the genetic cause and affected protein have not been identified. I experience joint hypermobility, joint instability, dislocations, scoliosis, other joint deformities, skin hyperextensibility, abnormal scarring, autonomic dysfunction, and potential for other structural weakness such as organ prolapse and hernias.

While hEDS is considered a rare disorder, the true prevalence is not known. This is mainly due to missed diagnosis and lack of recognition. There is no cure, so treatment is symptom management, often relying on physiotherapy and physiatry. My muscles have to be significantly stronger than the average person to compensate for compromised tendons and ligaments that would normally help to stabilize and secure my joints in place. Constant fatigue and pain are common. The good news is that the degeneration can be reduced through staying fit, but I have to be very careful in how I go about it since people with EDS are extra prone to injury. At the same time, deconditioning also causes more pain.

Sources:

Hakim, A. (2024). Hypermobile Ehlers-Danlos Syndrome. In M. P. Adam, J. Feldman, G. M. Mirzaa, R. A. Pagon, S. E. Wallace, L. J. Bean, K. W. Gripp, & A. Amemiya (Eds.), GeneReviews®. University of Washington, Seattle. http://www.ncbi.nlm.nih.gov/books/NBK1279/

The Ehlers-Danlos Society. (n.d.). What is EDS? Retrieved July 22, 2024, from https://www.ehlers-danlos.com/what-is-eds/

Collaboration with Heather Chapin Photography

For more, visit https://heatherchapin.photography/jenisefinlay

Other Volunteer Involvement

Calgary Women & Trans Climbing

Administrator & Co-Founder

Chronic Pain Support & Connections

Consultant

Alberta Charity Collaborations

Model

Ehlers-Danlos Syndrome Support Groups

Patient Navigator and Advocate

Modeling

After reconstructive foot surgery in 2023 when I was unable to participate in my usual activities, I wanted to challenge my mind outside of academia in a way that connects me to my body, while helping new photographers build their portfolio. I’ve continued modeling with the goals of increasing awareness around Ehlers-Danlos syndrome, showcasing a body type underrepresented in mainstream media, and challenging misconceptions about disability, sensuality, and femininity.