Her parents noticed the first signs that Leeolou had psoriasis when she was a year old. At times, patches of red, itchy skin covered most of her body, including her face, arms, and legs. Her skin would often crack and bleed, and the pain felt like she was on fire. “My skin was uncontrollably erupting with a rash. It spread everywhere, it hurt terribly, and there was nothing that I could do about it,” Leeolou says. “Then doctors and adults, whom I trusted, also said there was nothing that they could do.” Over the years, Leeolou tried everything: topical creams, prescription creams, acupuncture, diets, herbs, and light therapy (also known as phototherapy). She would put hot compresses all over her body just so she could move. When she was 4 years old, she was so fed up with her condition that she took a pair of children’s scissors and tried to cut off her skin. “It was hard to feel like I could be myself,” she says. “I felt trapped beneath my exterior.” At school, classmates bullied Leeolou and called her “crocodile” because of her rough skin. “Growing up, I developed a sense of shame for having psoriasis because both adults and children were afraid to come near me for fear I was contagious.” Leeolou says. “People would stare out of disgust and pity. I was deeply stigmatized, both explicitly and implicitly.” Leeolou says that the condition’s emotional and psychological toll can be just as disruptive and harmful as any physical symptoms. “I’m lucky that I haven’t experienced psychiatric illness or symptoms, but I understand how they may develop,” she says. “The rash is a hindrance to normal socialization, and psoriasis patients are largely stigmatized. I believe that for these reasons, patients feel overwhelmed and may be less able to cope with both their psoriasis and with other stressors in life.” But Leeolou learned not to let the disease define who she is.
Training to Be a Ballerina, “Psoriasis Plaques and All”
“Psoriasis gave me the gift of resiliency,” she says. “I learned that I could create the person I wanted to be, and it didn’t have to be within the confinements of a diagnosis. And with that, I pursued a career as a professional ballerina, psoriasis plaques and all.” Leeolou trained every day for hours, and she went on to perform with dance companies from New York to Moscow. “I just decided to train so hard, and be so good, that everyone would want to watch me dance no matter what my skin looked like,” she says. But she also had to contend with some dance partners who refused to touch her or directors who wouldn’t cast her because of her skin. “I always understood the irony. My appearance was tremendously flawed, and ballet is about perfection,” she says. “I didn’t have a long career the way I envisioned due to injury, but growing up with dance really gave me a sense of confidence that I’m not sure I otherwise would’ve had.” Leeolou, who is now in her mid-twenties, shifted course and went on to complete a double major in psychology and theology at Fordham University. She currently works as a clinical research associate in pediatric oncology in New York City. A biologic medication has made a big difference in her life. The first drug that she tried worked only for a few months, and she was afraid that all treatments would fail her. But her doctor encouraged her to try another drug, which she’s been using successfully for the past five years. “It’s extraordinarily effective. I went from about 80 percent psoriasis to less than 5 percent,” she says. “I feel amazing.” Leeolou stays strong now with regular physical exercise. She enjoys hiking, walking, swimming, boxing, and yoga. “Yoga has a dual benefit for physical health and relaxation,” she says. “I also meditate, using an app on my phone. Relaxation has always been important to me because stress can contribute to or worsen a number of immune-mediated responses.” She has also worked with the National Psoriasis Foundation as a volunteer and blogger. For Leeolou, dance helped her discover what she could achieve despite her psoriasis. “Ballet taught me that beauty is found in virtue and merit, and not in flawless skin,” she says.
