Speaking Up and Sharing Hope for Lupus Warriors
Talking about a health problem can be difficult, but when the problem is an autoimmune disease that causes the body to attack its own tissues it can be just as hard to keep quiet. Kaamilah Gilyard, 35, was first diagnosed with lupus at 17, but has traced back signs of the disease starting as young as 12-years-old, including the tell-tale butterfly face rash. Despite spending much of her teenage years quietly wondering what was causing her frequent ER visits and extreme fatigue – skipping classes to take naps – she’s been speaking up ever since.
“I am a living, walking example of what lupus is, what it looks like, and how it can affect someone. I want people to see me pushing through and staying positive so that if they’re suffering they keep pushing too,” she says.
It all began after her doctor recommended against going to college. Kaamilah refused to let her life’s adventures end at 18, so she applied anyway and wrote her college admissions essay about lupus. She went on to study at and graduate from Penn State, all the while making speeches and writing essays for courses about the condition’s effect on her.
“I have a big mouth, so I figured I might as well use it for good,” she says.
Kaamilah continues to share her inspiring words at a wide range of conferences and public speaking engagements, including CISCRP’s AWARE for All – New York event, the Lupus Research Institute (LRI) Lupus Trials Fair, and even in a congressional lupus caucus. She’s also heavily involved with the Alliance for Lupus Research, sharing her story in online videos and captaining teams for the organization’s annual walk for the past 7 years.
Kaamilah candidly shares her experience in clinical trials with other “lupus warriors” and those considering trial participation. “No man is an island,” she explains, saying she participates in trials not only for her potential benefit but also for her friends, family, and the millions of strangers who could benefit from her participation, too.
Her reason for getting involved in her first clinical trial, which she calls a “bright star” of her ten years living with lupus, was to help “take back the power” of her body. In her speech given at the LRI 2014 Lupus Trials Fair, she encouraged other patients to do the same, saying “we may have lupus, but lupus does not have us.”
She entered that study after one of the worst flare-ups in her life, following her doctor’s recommendation to participate and admitting that she’d “try just about anything” to feel better. For the next 3 years, she participated by taking her assigned pill and attending site visits for check-ups with a physician; including two years in the ‘open-label’ portion, during which she knew she was receiving the study drug. Even though she felt some improvement, she eventually left the trial due to the onset of lupus nephritis, or kidney inflammation.
“Everything happens for a reason though,” she says; the trial was terminated shortly after she left due to a lack of efficacy, meaning the researchers couldn’t prove that the drug was helping participants more than the standard treatments available.
Behind everything she does to advocate, Kaamilah says, is hope—for less flare-ups, for more “good” days, for the opportunity to live a “normal” (lupus-free) life, and most-of-all for researchers to learn more and someday cure the disease.