The Cystinosis Research Network (CRN), a Chicagoland based non-profit organization, has teamed up with an artist to create a simple explanation for treating a complicated, rare disease. In a new series of comic books, Kevin McCalla, a young artist living with Cystinosis, illustrates how his rare disease is managed through daily treatment. The first installment of the three-part series will be mailed to all interested parties that sign up here.
One in 10 Americans have a rare disease—nearly 30 million people—and two-thirds of these patients are children. Thus, it was important to create an educational story promoting medication compliance across generations. “I hope to utilize the unique strengths of comics to engage the Cystinosis community – patients of all ages, doctors, caregivers, social workers, and anyone who is interested.” –Kevin McCalla
Currently there is no cure for Cystinosis. Without cysteamine treatment, children with Cystinosis develop end stage kidney failure at approximately age nine.
The cysteamine treatment that keeps Cystinosis in check is often accompanied by side effects including an unpleasant taste, nausea, vomiting, and a strong, sulfur-like odor emitted from the skin. Part one in the series encourages conversations about Cystinosis as a noncontagious disease and reminds others to treat people as they would want to be treated.
For a free copy of the first installment, “Super Cysteamine Team” and to learn more about Kevin, visit https://cystinosis.org/news/announcements/225-cystinosis-comic-bookseries. You can also donate to the CRN at https://cystinosis.org/how-to-help/donate. The CRN is a patient advocacy organization comprised of family, friends, and medical researchers dedicated to finding a cure, developing treatments, and enhancing the quality of life for those affected by Cystinosis. According to the National Institutes of Health, a disease is rare if it affects less than 200,000 people. Cystinosis impacts approximately 2,000 people worldwide.