On the toughest days, Dion Langley struggles to deal with routine chores like cooking, cleaning or playing with her six-year-old son Jeremiah. “But I’m a fighter,” he said EBONY. The professional drummer and father of three is one of the few men to suffer from lupus, an autoimmune disease that attacks tissues and organs in the body, preventing people with the disease from living as usual.
According to the Lupus Foundation of America, whose Walk to End Lupus Now taking place nationwide on October 16, up to 1 in 250 African American women will develop lupus in their lifetime. Black women carry the highest prevalence for this known condition. But Langley is on a mission to bring comfort and a sense of normalcy to black men who are also in pain.
“Man systemic lupus erythematosus is often a neglected diagnosis and is not considered as much as it should be, ”says Magdalena Cadet, MD, a New York-based clinical rheumatologist. “A common myth that most people believe is that autoimmune disease only occurs in women. This is simply not true.
Langley was diagnosed with the disease in 2010 after spending 13 years in the United States Army. His plan was to withdraw from the armed forces, but Lupus had other plans. “Once I was diagnosed, it changed my whole life, my whole career, my whole state of mind,” says Langley. “And the funny thing about it is that I probably had it about two to three years before that.”
Around the age of 30, Langley says he began to experience symptoms that were unusual for him. “I just didn’t have the same energy. I couldn’t sleep, I couldn’t play with my two older children. It was even difficult for me to bend down and tie my shoe. I was losing my breath so quickly and had no appetite. I lost so much weight and found myself sleeping a lot. I was always tired.
Langley shares that these symptoms lasted for over a year and were often accompanied by minor aches and pains. When his conditions prompted him to seek medical attention, his doctor often prescribed pain medication to restrain him and ask him to rest. After two years of that, Langley says he finally went to the emergency room for what he thought was a quick visit. This turned into a series of tests and emergency surgery that led to the removal of a lymph node and a diagnosis of lupus.
“It is very important that men know the signs and symptoms of lupus so that an early diagnosis is made and treatment can be started immediately,” says Cadet. “Any man with multiple organ damage should consider lupus as a possible diagnosis. The Lupus Foundation of America claims that 1 in 10 people living with lupus is male. Cadet, an expert in autoimmune diseases, says that although men share common manifestations of lupus similar to those of women, men can often present with more serious and complicated disease upon initial presentation. “These men can have complications from heart disease and kidney or kidney disease. Low white blood cell count (leukopenia) and serositis or inflammation of the heart and lung lining causing chest pain or pain on inspiration may also be seen more often. This is why Cadet is absolutely committed to getting a diagnosis in a timely manner.
Now 43, Langley proudly sports his own lupus diagnosis. In addition to create clothes along with a “Beat Lupus” message, it also provides financial support to people who are struggling to afford medical bills. Equally important, he has created a support network for black men that encourages them not to suffer in silence. Cadet believes this is crucial in helping men fight this chronic disease. Although there is still some way to go before there is a parity level in the treatment of the disease in men, treatment is currently the same for men and women, and generally includes immunosuppressants. (drugs that suppress an overactive immune system) that can affect sperm count and fertility — Langley hopes that with more visibility the change will come. “I’m drumming to a different beat,” he says, “and that’s to beat lupus.”