Tamela Oglesby was gasping for air.
“It felt like my last breath,” the 35-year-old nursing assistant said, reaching for her throat as she recounted that night one year ago. “I thought I was going to die. My heart was just beating, really, really fast.”
Figuring it would be the fastest way there, she took a bus to Pennsylvania Hospital’s emergency room, a few blocks from her Northern Liberties apartment.
A chest X-ray revealed the diagnosis that changed her life in ways Oglesby could not have expected.
The tongue-twisting, inflammatory disease (pronounced sar-coy-doe-sis) is a mysterious, rare disorder of the immune system that can affect almost any organ in the body, including the lungs, heart, liver, and even brain. In the United States, it is most likely to affect young African American women like Oglesby, but it also occurs in men – the late comedian Bernie Mac may have been the most high-profile case. It’s also found with some frequency in people of Scandinavian descent.
Sarcoidosis is characterized by microscopic growths known as granulomas (clumps of inflammatory cells) that in some cases can interfere with organ functions, with devastating consequences.
No one knows the cause, though researchers suspect sufferers have a genetic disposition triggered by environmental factors. In some cases, the disease resolves itself. But in others, treatment can involve steroids, with numerous side effects. There is no cure.
“It’s kind of a scary disease,” said Paul A. Kinniry, Oglesby’s pulmonologist at Pennsylvania Hospital and a clinical associate professor of medicine at the University of Pennsylvania. “People can go five or 10 years and have a stable sarcoid and really don’t have to do anything. Or people could have a flare of sarcoid. You really have to pay attention to your own body and not ignore your symptoms.”
Oglesby, he said, came to him with a persistent cough, which she initially thought was a cold. Her shortness of breath and general malaise, along with an examination of her lungs, pointed in a more serious direction.
Initially, he put her on the steroid prednisone. Now, she uses Flovent, an inhaled steroid, and is encouraged to eat a healthy diet and exercise regularly to keep her symptoms at bay.
When Oglesby started reading up on sarcoidosis, the single mother of a 15-year-old felt both frightened and frustrated. But her generally upbeat nature won out. Within weeks of her diagnosis, she was finding ways to help others with the condition.
Oglesby shared her situation on Instagram with the handle ms.fighting_sarcoidosis_ and set up a Facebook page, Fighting Sarcoidosis Back. She also distributed wristbands and designed T-shirts with the message “Rare diseases count too. Sarcoidosis.”
Now, Oglesby is planning a fund-raising walk for April, which is Sarcoidosis Awareness Month.
“Instead of asking, ‘Why me?’ ” she said, “I decided I wanted to bring awareness to people and encourage people.”
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