22-YEAR-OLD Kiersten lives with a rare condition called Friedreich's ataxia (FA), which "causes progressive coordination loss" in all of her muscles. Growing up, she was a naturally athletic Varsity cheerleader - "the girl who would get thrown in the air." But on a family vacation, Kiersten's parents noticed that her sister Lauren was having "balance issues" and put Lauren "through a gauntlet" of various different tests that eventually led them to a diagnosis of FA. As Kiersten watched her sister perform the fateful balance test, she noticed she was "struggling too" and two weeks after taking blood tests, both sisters were formally diagnosed with the condition. Kiersten told Truly: "I was numb, I did not want to believe it, I didn't want anyone to talk to me about it. I was totally freaked out." The news rocked the family, as they learned that the condition is progressive and there is no cure - but, with the support of her parents, Kiersten came to terms with her situation and resolved to "turn that fear into working out and fighting it." With a harness rigged up in their garage at home and an exercise plan designed to keep Kiersten as mobile as possible, she uses her physical therapy sessions as a "stress reliever" as much as a way to maintain strength and coordination. Even though Kiersten now finds it difficult to walk down the stairs, with her relentless positivity, she has not allowed FA to prevent her from forging a successful career creating educational content for the rare disease community, or from finding love with boyfriend TJ, who never flinched when it came to the reality of her condition. However, she has faced judgement when out in public, with people accusing her of "being drunk" due to her coordination affecting both her gait and her speech. Whilst Kiersten admits that it "does really get to [her]", the negativity has only persuaded her that her work in raising awareness is ever more important - and she is now more determined than ever to let the rare disease community know that they are "not alone."
Please donate to Kiersten's GoFundMe: https://www.gofundme.com/f/support-kiersten-laurens-fight-with-fa
