Woman with little-known condition becomes advocate
For the last 12 years, Aretta Hairston-Smith has struggled with a disease that most people have never heard of. She’s hoping to change that.
Hairston-Smith has sarcoidosis, a disease that can cause inflammation in any organ in the body. It occurs more often in African-Americans than Caucasians and in women more than men. Hairston-Smith will soon receive a proclamation from Mayor Allen Joines declaring July as Sarcoidosis Awareness Month. She lobbied for the honor in hopes of bringing the uncommon condition to the forefront.
“I want people to be aware of sarcoidosis, to learn more about it,” said Hairston-Smith.
It’s unknown what causes sarcoidosis, a disease that afflicted the late comedian Bernie Mac, but genetics are believed to be a factor. According to Dr. Matthew Miles, an assistant professor of medicine, pulmonary and critical care at Wake Forest University School of Medicine, the disease can range from being asymptomatic to severe enough to require a lifetime of treatment. It has no cure, but patients usually respond to medication, he said. There are 15 cases for every 100,000 people, Miles said. Hairston-Smith is among the dozens of local residents who suffer from the disease, he said.
“It’s probably uncommon in general, but not very rare,” Miles said.
Hairston-Smith discovered she had the disease after repeatedly getting sick with a constant cough. She also experienced major weight loss. Her primary care doctor couldn’t figure out what was ailing her. She was referred to numerous doctors for tests over a one year period.
“I just went to all kinds of doctors – you name it – every doctor I’ve been to,” she said.
In December 2001, swollen lymph nodes caused a severe sore throat. Fearing it might be cancer, a specialist did a biopsy. The overnight results finally diagnosed what was wrong.
“She said, ‘You have a disease that is called sarcoidosis,’” said Hairston-Smith. “And I said ‘sarco-what?’”
Hairston-Smith learned about the disease and over the years has experienced many variations of it first hand. It has caused blotches on her skin – a common form of sarcoidosis that is often treated with topical cream; and x-rays showed spots on her lungs. The latter is the most common occurrence for those with sarcoidosis. It caused Hairston-Smith shortness of breath and led to her being hospitalized twice for pneumonia.
Hairston-Smith said the scariest manifestation of the disease occurred in 2007. She went to the doctor for pain in her legs, and a chest x-ray revealed fluid had built up around her heart. Surgery was required to drain it.
“When I had the heart surgery, the doctor told my husband and my parents I shouldn’t be living because they couldn’t see my heart; there was so much fluid it covered my heart,” she said.
She recovered from the surgery and has now gone six years without a flare-up. She still has to take three pills a day, but that is better than the 10 she once had to down.
Her lungs have improved to the point that her husband bought her a bicycle she can ride in moderation.
“When I tell people my story, they say you’d never know it because I’m the same person, still smiling and going on like I’m supposed to,” said Hairston-Smith.
She said her family, friends and co-workers have all been supportive and helped through her illness. She also gets support from a sarcoidosis support group in Raleigh and hopes to soon start a support group locally.
Those interested in starting a local sarcoidosis support group can contact Hairston-Smith at firstname.lastname@example.org.