Read Cristina Toro's inspiring story about her life with lupus and how her daughter helped motivate her to take part in the Walk to End Lupus Now™
Kylie Katz: “I won’t let lupus define who I am”
Kylie Katz is 16 and already she has learned some of the biggest and toughest lessons in life.
As a competitive equestrian, she practices six days a week and has learned to work in partnership with her horse, Tucker. When ring-like rashes started appearing on her face, her family and doctors suspected ringworm. But the medications didn’t work, so she had blood tests and a biopsy before being diagnosed with discoid lupus approximately six months later.
Her mother Michele is a registered nurse and her mother's wife, Melissa, is a nurse practitioner. Kylie has two brothers– Jonah, age 3, and Grey, 8 months old. The absence of common symptoms, such as joint pain and fatigue, made her parents overlook lupus as a possibility. Kylie’s parents were persistent in advocating for her care and pushing for a diagnosis quickly, and the family believes that supportive healthcare providers make all the difference in Kylie’s health.
After her diagnosis, Kylie’s immediate concern was for her future.
Currently, she has seven doctors. Her choice in colleges will be limited by the need to stay close to home, or face finding a whole new care team. She has had to start wearing coverup make-up and sunscreen, monitor her stress levels, and wear sun protective clothing. She's constantly managing her health in order to minimize symptoms.
Understandably, kids at school asked a lot of questions about her skin, and the family decided early on to be open about Kylie's diagnosis. While they initially feared that people would focus on the physical effects of the disease, they began to see a shift in attitudes based on their willingness to talk about lupus.
Ultimately, Kylie was named prom queen(!) and her optimism about the future rebounded.
“I won’t change the plans for my life because of this disease. I won’t let lupus define who I am and who I'm going to be in the future. I am not afraid.
My plan is to face the challenges with a positive and optimistic attitude. I will continue to ride horses and I will go to college. I am the same person inside, I may have lupus but lupus does not have me.”
As for right now, Kylie is organizing a purple foam dance party for lupus awareness in August, and her Walk to End Lupus team "K. Crew" has already exceeded its fundraising goals. We're so inspired by your optimism and energy, Kylie!
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