Kyra Miller sometimes gets peculiar stares from people wondering why she has an umbrella out when there’s no chance of rain.
Or why she dons gloves, pants and long sleeves even on a sunny afternoon. But one day, a woman finally understood.
“Excuse me, do you have lupus?” the woman asked. Kyra was surprised by her insight about this little-known disease and soon learned that the woman’s friend has lupus and never ventures outside because of how sick she gets from the sunlight. While Kyra had learned to adjust to the stares and overcome her self-consciousness, she knew she needed to help others get outside too and spread awareness about this disease.
What is Lupus?
Systemic Lupus Erythematosus is a chronic autoimmune disease characterized by flares, which are often triggered by ultraviolet light. About 1.5 million Americans have been diagnosed with lupus, and it primarily affects women between the ages of 14 and 44. Of those, roughly half are “photosensitive,” which means that UV rays cause the immune system to attack their joints and organs. Kyra was diagnosed with lupus last year after three sun-induced attacks on her kidneys, lungs, and joints. Since then, Kyra wears UV protective clothing and carries a special UV umbrella, which to her dismay is gray, drab, and looks like it’s for the rain.
After her diagnosis, and hearing countless stories of others, Kyra hopes to give people back their freedom by being able to go outside again, free of embarrassment or worry about their health.
One part of this initiative is through SUNday Stroll events. Kyra’s first SUNday stroll was held on October 14 and she and her friends and family created brightly colored SUNbrellas at her home in Kenilworth. “My goal is to turn having a serious disease into something bright and ‘sunny’ by strolling down the street with decorated umbrellas. This is just the beginning of more events to come in the spring,” Kyra says.
Kyra hopes to raise awareness not just about lupus, but about the myriad of other conditions that prevent people from enjoying the outdoors. And further, she hopes to increase the concern for sun protection for everyone, not just those who face more serious consequences.
Kyra also plans to develop a line of colorful, UV proof SUNbrellas that are fun, stylish and safe for the sun. With this line Kyra hopes to popularize the use of the parasol in America so that children and adults with or without photosensitive diseases can feel comfortable carrying an umbrella even in the sunshine.