Patients share lupus stories to raise awareness
All month long, you may have seen lupus patients wearing purple in support of Lupus Awareness Month to bringing awareness to their disease and the unique experiences that accompany this condition. Throughout May, patients from all over the country have used this time to tell their story, advocate for decreased diagnosis times and educate the public about the 1.5 million Americans who suffer from this mysterious illness.
Lupus is an autoimmune disease, meaning a patient’s body does not know the difference between its own, healthy tissue and foreign invaders. As a result, the body attacks its healthy tissue. The most common symptoms of lupus include severe fatigue, pain or swelling in joints, skin rashes and fevers and because symptoms may vary in type or severity, it often takes years for a doctor to correctly diagnose a patient with lupus. Many lupus patients are often misdiagnosed, causing delays in treatment that can result in long-term consequence. On average, lupus patients wait six years for a diagnosis.
The disease is most prevalent in young women between the ages of 15 to 44 of Hispanic or African American descent, and there is no known cause or cure. While lupus affects millions worldwide, over 60 percent of Americans have never heard of the disease. To combat this, lupus patients and advocates have teamed up with local media outlets to publicly tell their stories.
Clara Alvarez, a lupus patient in Tampa, Florida, shared her experience with a local media outlet: “Some days I go to bed fine and the next day, I can’t get up.”
In recent years, a handful of high-profile celebrities have opened up about their lupus diagnosis, including pop sensation Selena Gomez. Gomez has been vocal about her struggle fighting lupus, often using social media as a platform to raise awareness about the disease. After she underwent a kidney transplant in 2017 – a procedure lupus patients often undergo if the body starts to attack its own kidneys – she shared her story on Instagram about her experience. Gomez continues to be active in organizations dedicated to combating the disease, like the Lupus Research Alliance, and has spoken out about her desire to discover a cure: “I’d like to see the day when all young women can realize their dreams of life without lupus.”
The Chronic Disease Coalition continues to support patients who are fighting a chronic illness and encourages all patients to tell their story.