Fighting Back with Kathryn Garrity

Kathryn Garrity is an athlete. Back when we first met her in 2014, she was Kathryn Blake, a sophomore in college with a volleyball scholarship to the University of California, Merced. Six years later, this rare disease advocate has endured several misdiagnoses, complicated procedures, traveling out-of-state for life-threatening surgeries, and teaching herself how to walk again. Now, Kathryn is stronger than ever and determined to advocate for herself and others in the best way she knows how: by going back to her roots as an athlete.

Her Story

Kathryn’s journey with rare disease began when she first visited her doctor for pelvic pain in 2013, believing she had fractured her hip in a volleyball game. It was here that Kathryn was first introduced to Nutcracker syndrome. Compression of her left renal vein put Kathryn at risk for blood clots, pulmonary embolisms, aneurysms, and other serious medical complications. This led to a series of visits to Stanford Medical Center, where Kathryn underwent many different tests and consultations, two vascular procedures, and doctors who needed to google her disease because it was so rare. All of this would later reveal that Kathryn had two rare vascular diseases, both May-Thurner syndrome, as well as Nutcracker syndrome. For the next three years, Kathryn would become immersed in the world of rare disease.

“When you go from a point of being strong, capable and able to do things yourself, having a rare disease is very frustrating because you start to lose part of your identity.”

When asked how she manages to stay hopeful, Kathryn credits support from her family, God, support groups, and Crossfit community. While health problems forced her to drop out of college, relinquishing her volleyball scholarship, Kathryn remains determined to find work she is passionate about. She started working out again, getting stronger and creating an athletic community for herself through Crossfit. Feeling a strong need to advocate for others with rare diseases, Kathryn began handing out ribbons and organizing fundraisers at her gym, creating bonds within the rare disease community. She also began working as a volunteer firefighter and eventually became an EMT. In the midst of building her new life, Kathryn would discover that her fight with rare vascular diseases was far from over.

In 2018, Kathryn began feeling pain in her lower back. Thinking it was due to overexerting herself in her workouts, she visited a chiropractor. After an emergency room visit and another trip to Stanford Medical Center, Kathryn discovered that the compression in her leg had been a side effect of Nutcracker syndrome, and that she would need to undergo a left renal transposition, moving her left kidney down two inches in order to prevent more clotting in her renal vein. Kathryn’s situation grew more complicated when she learned that due to the nature of the surgery, she would have to travel out of state and spend several weeks there on bed rest. Two days after marrying her husband in November of 2018, the duo spent their honeymoon traveling to Washington for Kathryn’s surgery consultation.

“The hardest part about having a rare disease is feeling like you’re alone in what you’re going through. I was lucky in finding my support system, and I’m inspired to be that support system for everyone else with a rare disease.”

Kathryn describes her post-op recovery as “the most excruciating pain I have ever experienced.” An 11 inch cut down the middle of her abdomen serves not only as a painful reminder of the month she spent recovering at the University of Washington Medical Center, but also of Kathryn’s overwhelming support system. After seeing friends and family members drive up the coast to visit her, connecting with fellow patients at the hospital, and seeing members of her gym create a workout that would fundraise money towards her travel expenses, Kathryn knew she had to give back.

Fighting Back

Feeling inspired and passionate about regaining her identity as an athlete, Kathryn began creating a Crossfit workout that would be doable for rare disease patients. She got the idea from Crossfit’s “Hero Workouts,” a tradition of completing a high-intensity workout that honors fallen first responders who have died in the line of duty. Seeing how people were able to come together and support total strangers, she had high hopes that the same could be done to benefit rare disease patients. Creating a workout that is ability-inclusive is an important factor of Kathryn’s project, as she was unable to participate fully due to her own health limitations, in the beginning opting for a PVC pipe over weights.

“I want Crossfit to be known as something that is doable no matter your size, weight, age, or capabilities.”

Dubbed “Reps for Rare Diseases,” Kathryn’s following has only grown in the three years since she began combining advocacy with athleticism. This year, she has been able to involve three Crossfit gyms to participate in her workout for World Rare Disease Day on February 28 and 29. Through this process, Kathryn has also organized a raffle fundraiser, involving community members from her ambulance company and across her local area of Modesto, California. For people with rare diseases, it is often easy to focus on limitations. Kathryn has resolved to empower the rare disease community and herself through physical and emotional support, turning limitations into new capabilities. “If I was in that bad of a place, and this is what Crossfit can do for me, I know what it can do for other people… I want everyone to know that someone out there is fighting for you.”

What’s Next?

Kathryn is looking to get Reps for Rare Diseases certified with Crossfit gyms worldwide, spreading advocacy to gyms around the world.