Tissue syndrome not deterrent for dedicated athletes
Ria Parikh | Staff Writer
Despite being named “the most neglected disorder in modern medicine by the Ehlers Danlos Society, Ehlers Danlos syndrome (EDS) regains its prominence through the heavy impact it has on the lives of those inflicted with the disorder.
EDS is a genetic condition that weakens connective tissue all over the body, manifesting into 13 different types that affect people in differing ways. Senior Kaitlyn Langbein has undergone seven surgeries in her 18 years due to EDS. After many years of breaking bones, Langbein said she found out about her condition in third grade when she went to a geneticist. It was during that same visit, she discovered her mother and grandmother also had EDS.
“I started breaking bones when I was two,” Langbein said. “I broke my wrist, and then I broke bones again when I was four, five, and six. My parents were really worried about what was happening. We went to a bunch of doctors and they never found anything until I was in third grade, and I went to a geneticist, and he was like, ‘This is what you have.’”
Because of the physical limitations of EDS, Langbein said that from the age of nine, she was forced to rethink her future goals, depending on what her body could handle.
“I was nine, and I had my mind set on being a dancer,” Langbein said. “And I thought, ‘This isn’t going to work. My hips are going to give out on me and I won’t be able to walk by the time I’m 20,’ which is what the doctor told me. He said, ‘You can try, but it’s not going to work.’ It really changed my perspective at a young age.”
Senior Ale Zaleta also has EDS, and said an indication of the syndrome for her was the presence of subluxations, which are similar to partial dislocations. As time went on, those subluxations became dislocations, and now a common area for EDS flares is her spine.
“Every person has different types of flares,” Zaleta said. “For me, I have back spasm flares. Because I have EDS, that, for some reason makes me get spinal instability. When I overuse muscles, especially those back muscles, it pulls my spine to different spots because of the way the muscles pull.”
Like Langbein, Zaleta also dreamt of playing sports — volleyball and soccer — for most of her life. When she realized that EDS took away that possibility, Zaleta said she began to embrace the aspects of her favorite sports that she missed out on as an athlete.
“Now, instead of playing those sports, I get to watch them,” Zaleta said. “And when my friends go out and play, I’ll go cheer for them. It has its pros and cons.”
Senior Brenden Malloy plays lacrosse despite his EDS and has broken many bones. Malloy said he continues to play because he does not want to stop doing what he loves, even though he suffers consequences after.
“As I’ve gotten older, I don’t break stuff as often,” Malloy said. “I just break my fingers or something–not a big deal. Lacrosse is just fun, something I love to do, so I’m not going to stop.”
Malloy said certain types of EDS impacts boys and girls differently, namely in the development of body flexibility over time.
“My sister has it too,” Malloy said. “In me, I used to be really flexible. As boys grow, they typically get super stiff, like now I can’t touch my toes or anything. In girl’s, they’re the opposite. They usually start off stiff, and now my sister is super flexible; she can touch her thumb to her wrist.”
Throughout her life, Langbein has had to undergo multiple surgeries due to the fragility of her bones, but with experience, she has been able to understand her limitations and still indulge in the sports she loves to play.
“I got bodied by a guy, and it was supposed to be a non-contact sport, but he broke my collarbone,” Langbein said. “It hurts my body, but I know my limits to a point where I don’t break, and most of the stuff that happens now are freak accidents that shouldn’t happen. I just play to have fun, because I don’t see a point in sitting inside and not enjoying life simply because of this disease.”
Although Zaleta’s original choice to go into nursing was limited by EDS, it has inspired her to pursue other avenues in the healthcare field, such as medicine and neuroscience, that would be less physical.
“Through middle school and early high school, I thought I wanted to go into nursing,” Zaleta said. “But the more shadowing I did and the more research I did, I realized it’s a very physically demanding job even though you wouldn’t expect it: it’s a lot of time on your feet and carrying things. I don’t want to say that EDS made me change my career path, but it definitely impacted my choice.”
Even outside of school, Zaleta said she is often physically unable to do activities such as hiking, but her limitations have inspired her friends to pursue new hobbies that align with her abilities.
“Instead of going hiking with my friends, they’ve all pursued hammocking and movie-watching,” Zaleta said. “They understand that when I’m having EDS flares, we’re not going to go out and do fun things and normally they’ll come to hang out with me. It impacts every part of your life, but not as drastically as I thought it would.”
Langbein said that after having EDS for such a long time, she has learned to embrace it and use it to learn more about herself.
“At first I saw it, and it made me angry,” Langbein said. “I was being told by a doctor, ‘You can’t do the things you love to do,’ and that just made me mad. Now, I look at it as a blessing: it’s helped me become stronger and know myself more. It’s part of my life, I can’t get rid of it, so I might as well look on the bright side.”
Photos contributed by Kaitly Langbein and taken by Riley Johansen.