Krayzie Bone, Floyd Mayweather Jr., and Tisha Campbell are just two of the 1.2 million people across the globe impacted by sarcoidosis. The disease is three times more likely to affect Black people.
Sanjay S. Shukla, M.D., M.S. President and CEO aTyr Pharma, Chidinma Chime-Melton MD, MBA, FCCP, CPHQ, Assistant Professor of Medicine, UCLA, and Andrea Wilson, a sarcoidosis patient and advocate, discussed the fight against sarcoidosis at the Fall Black Health Summit.
How does sarcoidosis impact the Black community?
“What is really striking here, though, is that it’s so prevalent in our community,” said Dr. Chime-Melton. She cited the alarming statistics about the disease. “In the African-American community, it’s three times as common, so if you’re looking at the epidemiology of it, they tell you, oh sarcoidosis is about 10 in 100,000 patients will have it but within our community, it’s 34 In 100,00 patients. So, it’s three times as common,” she continued.
Dr. Chime-Melton paused and invited the audience into the conversation, taking an impromptu survey of the people in the room. She asked who knew someone with the disease, causing a barrage of hands to go into the air. The anecdotal evidence supported a theory she had been harboring. “I believe firmly that it’s highly under-reported,” she said.
Race is not the only indicator that someone can be at an increased risk for sarcoidosis.
“It’s more common in women as well,” Dr. Chime-Melton revealed before explaining that it is “twice as common in women.” Black people are not just diagnosed more often. They also have poorer outcomes, according to Dr. Chime-Melton. “We have a higher prevalence of the disease, but it doesn’t end there, unfortunately,” she said. “When we do have the disease, we also have worse forms. So we see more breathlessness. We see more shortness of breath. We see more coughs and progression to the fibrosis to the scar and in the lungs.” .
Wilson shared her personal experiences during the painful journey towards arriving at a diagnosis. “I have walked the challenging path that many of you sarcoidosis patients are on right now,” she said. The symptoms that led her on a long path to being diagnosed appeared in 1986.
“I had a nagging cough, fatigue, and unexplained weight loss,” she added. She learned she had sarcoidosis after several misdiagnoses.
She now had the needed information after being subject to a series of irrelevant treatments. “I was finally thrilled that I was diagnosed with something and that it was not all in my head.” Wilson was subject to the medical gaslighting that many women experience. Her diagnosis offered her vindication. “It was not my menses. It was not the fact that I was a young 20-some-year-old woman and that it was stress which I had been told,” Wilson continued.
Steroids are not the only answer.
Wilson was prescribed prednisone, a steroid with significant side effects, including irritability, extra hair growth, fatigue, rampant sweating, and diminished libido. She worked with her caregiver to decrease the role of medicine in her care. “With my doctor’s guidance, we’ve created a multifaceted treatment plan to reduce my reliance on prednisone,” she said. Dr. Shukla expressed a distaste for the overwhelming use of steroids to manage sarcoidosis. He labeled them as “toxic therapy” and described witnessing the dismissal of the need for new treatment methods by executives. “Big companies or even you know investors, they would say, ‘It’s not that bad of a disease, those patients can just take steroids,’ and that just really bothered me,” he said. Dr. Shukla was impacted by seeing “what steroids can do to someone’s life.” “In 50 years in the medical textbooks, they’re going to say this was poison,” he declared.
Sarcoidosis impacts more than the lungs. “90% of people have it in the lungs, but then you appear in multiple other organ systems. It can affect the eyes, lead to strokes, and the skin,” explained Dr. Chime-Melton.
Take Action
- Persistent coughs are cause for concern. Request a chest X-ray if you suspect you have sarcoidosis.
- Talk to your doctor about alternative healing methods. Nutrition can make a difference in a patient’s quality of life, and you have the right to seek information.
- Ask questions about the side effects of any treatment therapies and stay current on your options.
This session was presented by aTyr Pharma
Panelists:
Sanjay S. Shukla, M.D., M.S. President and CEO aTyr Pharma
Chidinma Chime-Melton MD, MBA, FCCP, CPHQ Assistant Professor of Medicine, UCLA
Andrea Wilson Sarcoidosis Patient and Advocate
