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  • Meg McCall

Reclaiming Her Active Lifestyle : Rachael’s Kayaking Journey with Ehlers-Danlos Syndrome

Among the scenic trees and rivers of Middle Tennessee, Rachael Cooper has built a life filled with adventure, love and the great outdoors. With her husband, Sean, and their teenage son, she enjoys a myriad of activities, including foraging, rockhounding, hiking and kayaking.

woman with ehlers-danlos syndrome kayaking

Rachael was newly married the first time she tried kayaking. The experience motivated her to go several more times with local outfitters until, eventually, she and her husband purchased their own kayak and started exploring waterways near their home. “I definitely prefer kayaking on lakes and ‘low and slow’ rivers,” Rachael says, though they’ve also kayaked on Muskallonge Lake in the Upper Peninsula of Michigan.

Rachael's life hasn't always been smooth sailing. In 2017, she began actively seeking answers for some health issues she was experiencing. In 2020, her medical journey led her to a formal diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS), a genetic disorder that affects the connective tissues, causing various issues such as joint hypermobility, skin hyperextensibility and impaired wound healing. Symptoms include overly flexible joints, stretchy skin and fragile skin, among others. In addition to hEDS, Rachael also had accompanying issues of dysautonomia, craniocervical instability and bilateral multidirectional instability of her shoulders.

Embracing Adjustments and New Discoveries

When her hEDS symptoms started to impact her daily life, Rachael began to worry that she might have to give up her favorite activities, including kayaking. “At that time, my symptoms and flares were not consistently under control, and it seemed as though none of my hobbies were appropriate,” she notes. Managing her condition became a part of her daily life, but Rachael was determined to reclaim her active lifestyle. That's when she first heard about Angle Oar's Versa Paddle System in an EDS Facebook group. Versa is a mount-supported paddling system that allowed her to get back on the water and participate in kayaking again.

The Role of the Versa Paddle System

The Versa Paddle System was Rachael's gateway to kayaking independence. For individuals with hEDS, proprioception (awareness of one's body in space) can be challenging, leading to potential joint misalignments, fatigue, pain and injury. “The Versa helps me protect my upper body and neck and keeps me from becoming fatigued quickly, and not having to manage the weight of a paddle means endurance is less of an issue. Seeing as proprioception is generally not a zebra’s strong suit, this helps me keep my joints and spine in the correct position,” she reports. It was a game-changer that enabled her to focus on the joys of kayaking rather than being preoccupied by her body's needs.

“I don’t have to mind every little movement and position when I’m kayaking; I get to just be Rachael and enjoy myself,” she explains. She recently took her son to meet up with friends at a lake 90 minutes from their home. “We paddled for 3 or 4 hours and drove back home.”

In the past, such an excursion would have been a daunting prospect due to the risk of pain flares and fatigue. However, the Versa Paddle allowed Rachael to kayak without constantly worrying about her condition. She was overjoyed to experience a day of kayaking without a flare-up. “(I was) tired and a little stiff, but no flare. That’s a LOT for me in one day. I’m so proud!”

Kayaking and Living with EDS: An Ongoing Journey

Rachael says that learning how to live in her own body has been the most humbling experience of her life. “I’ve always been active (and never the best patient). Movement and distraction are my first lines of defense against pain,” she says.

kayaking in middle Tennessee

“When I’m in a vehicle, I have less pain if I’m the driver because having my hands on the wheel helps me brace and maintain better posture.” She says the same is true when she’s in her kayak. “Stable and appropriate hand, arm and shoulder placement help with my general posture and those make attending to the position of my head much easier. I can focus on enjoying the water instead of being distracted by my body.”

As a result of these kinds of adjustments, Rachael has begun slowly returning to many of her favorite pastimes.

Trust Yourself

Rachael's story is a testament to the power of resilience, determination and innovation. Despite facing the challenges of Ehlers-Danlos Syndrome, she refused to let it dictate her life choices. With the help of Angle Oar's Versa Paddle System, Rachael reclaimed her love of kayaking. Her journey serves as an inspiration to individuals with EDS and others facing health obstacles, reminding us that with the right tools and support, we can continue to embrace life's adventures. As Rachael wisely puts it, "You know your body better than anyone else. Trust yourself."

Learn More About Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome is a group of hereditary disorders that impact connective tissues, particularly collagen and allied proteins. There are thirteen types of EDS, and while some subtypes have identified genetic variants as the cause, hEDS remains mostly diagnosed based on its clinical manifestations. Symptoms include overly flexible joints, stretchy skin and fragile skin, among others.

Who is Affected

EDS is a rare condition, and the prevalence varies depending on the subtype. It affects both males and females of all racial and ethnic backgrounds. The exact number of people with EDS worldwide is uncertain due to underdiagnosis and misdiagnosis. However, it is essential to raise awareness about the condition to facilitate timely diagnosis and support for those affected.

"Double-Jointed" Misconception

In the past, people with EDS were often referred to as being "double-jointed" due to their joint hypermobility. This term was used colloquially to describe individuals who could bend their joints in seemingly unnatural ways. However, this label perpetuated a misunderstanding of the condition and overlooked the complex and sometimes debilitating effects of EDS on individuals' overall health and daily lives.

Symptoms of Ehlers-Danlos Syndrome

The symptoms of EDS can vary widely among individuals, and they depend on the specific type and severity of the disorder. However, some common signs and symptoms include:

Joint Hypermobility: People with EDS often have overly flexible joints that can move beyond the normal range of motion. This joint hypermobility can lead to frequent joint dislocations and chronic joint pain.

Skin Hyperextensibility: The connective tissue's weakness allows the skin to stretch much more than usual. Individuals with EDS may be able to pull a pinch of skin up and away from their flesh, and it will snap back when released. The skin might also feel exceptionally soft and velvety.

examples of ehlers danlos syndrome symptoms
Courtesy of Whitaker JK, Alexander P, Chau DY, Tint NL

Fragile Skin and Poor Wound Healing: The weakened connective tissue in EDS can lead to fragile skin that does not heal well. Even minor injuries may result in slow healing and thin, crinkly scars.

Chronic Pain and Fatigue: Joint and muscle pain are common in individuals with EDS. The constant struggle with chronic pain and fatigue can significantly impact daily life.

Organ Prolapse and Gastrointestinal Issues: EDS can lead to organ prolapse through the pelvic floor, causing discomfort and complications. Gastrointestinal problems such as diarrhea may also be present.

Dental and Eye Issues: Dental problems, such as hypodontia of permanent teeth, and eye conditions can also be associated with some types of EDS.

To learn more, visit the Ehlers Danlos Society. Rachael also recommends Dr. Cortney Gensemer who she says does an incredible job educating the public about EDS. “She shares our diagnosis and is studying our condition,” notes Rachael.


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