On the most challenging of days, Dion Langley has difficulty taking care of routine tasks like cooking, cleaning, or playing with his six-year-old son Jeremiah. “But I’m a fighter,” he tells EBONY. The professional drummer and father of three is one of few men who suffer with lupus, an autoimmune disease that attacks the body’s tissues and organs, leaving sufferers unable to carry on life as usual.
According to the Lupus Foundation of America, whose Walk To End Lupus Now will take place nationally on October 16, as many as 1 in 250 African American women will develop lupus in their lifetime. Black women carry the highest prevalence for this known condition. But Langley has made it his mission to provide comfort and a sense of normalcy to the Black men who suffer as well.
“Male systemic lupus erythematosus is often an overlooked diagnosis and not considered as much as it should be,” says Magdalena Cadet, MD, an NYC based clinical rheumatologist. “A common myth that most individuals believe is that the autoimmune disease only occurs in women. This is simply not true.”
Langley was diagnosed with the disease in 2010 after serving 13 years in the United States military. His plan was to retire from the armed forces, but lupus had other plans. “Once I got diagnosed, it just shifted my whole life, my whole career, my whole mindset,” says Langley. “And the funny thing about it was, I probably had it about two to three years prior to that.”
At around the age of 30, Langley says he started experiencing symptoms that were uncommon for him. “I just didn’t have the same energy. I couldn’t sleep, couldn’t play with my two oldest kids. It was even hard for me to bend down and tie my shoe. I would lose breath so quickly, and I didn’t have an appetite. I lost so much weight and I just found myself doing a lot of sleeping. I was always tired.”
Langley shares that these symptoms continued for over a year and were often accompanied by minor pains. When his conditions pushed him to seek medical help, his doctor would often prescribe him pain treatment to hold him over and instruct him to get rest. After two years of that, Langley says he finally went to the ER for what he thought would be a quick visit. It turned into a series of tests and an emergency surgery that led to a removed lymph node and a lupus diagnosis.
“It is very important that men are aware of the signs and symptoms of lupus so an early diagnosis is made and treatment is started immediately,” says Cadet. “Any male with multiple organ involvement should consider lupus as a possible diagnosis.” The Lupus Foundation of America asserts that 1 in 10 of people living with lupus are male. Cadet, an autoimmune disease expert, says that although males share common manifestations of lupus similar to women, males may often present with more severe and complicated disease upon initial presentation. “These men may have complications from heart disease and renal 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.” That’s why Cadet is adamant about getting a timely diagnosis.
Now 43, Langley sports his own lupus diagnosis proudly. In addition to creating apparel with a “Beat Lupus” message, he also provides monetary support to sufferers having a hard time paying medical expenses. Equally important, he’s created for Black men a support network that encourages them not to suffer in silence. Cadet believes this is crucial to helping men battle through this chronic condition. While there is still a way to go before there is a level of parity in treating the disease in men—currently treatment is the same for men and women, and typically includes immunosuppressants (medications that suppress an overactive immune system) which can affect sperm counts and fertility—Langley hopes with more visibility will come change. “I’m drumming to a different beat,” he says, “and that’s to beat lupus.”