From candy striper to benefactor: Susan Pearlstine builds legacy on supporting sarcoidosis research

Susan Pearlstine never would have guessed, as a young girl working as a candy striper and handing out magazines to patients at MUSC, that one day she would become a multimillion-dollar supporter of that same hospital.

“That was a long time ago, and that memory is still very fresh,” she said. “I’ve always felt very fortunate to have this hospital in my hometown.”

Likewise, Pearlstine never anticipated that her neighbor, Dr. Richard Silver, would become a physician who changed her life following a potentially crippling diagnosis – or that she would go on to repay the favor.

MUSC’s Department of Medicine on May 5 dedicated the Susan Pearlstine Sarcoidosis Center of Excellence. Sarcoidosis, an inflammatory disease, affects various parts of the body and often settles in the lungs.

The Susan Pearlstine Center will expand opportunities for sarcoidosis patients at MUSC, already one of the largest sarcoidosis care providers in the country. South Carolina ranks fourth nationally in instances of sarcoidosis-related mortality, and MUSC receives more than 2,200 outpatient visits per year, according to College of Medicine researchers. Nearly half those patients display advanced-stage lung disease.

Dr. Silver noted at a reception honoring Pearlstine that the center brings together researchers who focus on sarcoidosis and related fibrosis diseases in a single physical setting. “By pooling all our resources, we are much more likely to be successful -- not just in terms of getting grants, but in finding a cure,” he said. 

In fact, one fibrosis researcher, Dr. Carol Feghali-Bostwick, is preparing to test a novel therapy for scleroderma, an autoimmune disease that leads to an overproduction of collagen that often results in pulmonary fibrosis. A similar complication accounts for the majority of deaths from sarcoidosis.

“I’ve known Susan in different ways -- first as a neighbor, then as a friend, then as a patient and now as a benefactor,” Dr. Silver said. “I know that she has a vision. She wants to help patients throughout South Carolina and beyond who have sarcoidosis.”

College of Medicine Dean Dr. Raymond Dubois pointed out that private gifts fill in gaps of grant funding, including infrastructure, recruitment and experimental treatments. For Pearlstine herself, experimental treatment freed her from the limitations of her disease.

She learned her own diagnosis over time. She lived in Park City, Utah, when her first symptoms arose and her eyes became inflamed.

Months later, after successful treatment for her eyes, another problem popped up at the top of a ski lift: She couldn’t breathe. Pearlstine soon learned that her seemingly unrelated medical problems were both the result of sarcoidosis.

The disease soon began to affect her skin, and physicians became concerned that she suffered a heart condition. Multiple tests ruled out any cardiac problems.

Pearlstine came to MUSC and began an off-label treatment regimen that keeps her symptoms under control. She also returned to Charleston as a full-time resident.

“I won’t run a marathon, and I won’t be a competitive mountain climber, but I live life mostly on my own terms,” she said. Knowing what sarcoidosis patients face, she hopes that her contribution will become her legacy.

Far from her candy striper days, Pearlstine grew up to become a patient and friend to MUSC, as well as an honorary degree recipient. She was awarded her Doctor of Humane Letters at commencement on May 20.

“It’s so amazing to be able to do this and to change the world a little bit,” she said. “My dad has this saying that sometimes you can do these things and you can still take a ski trip. I don’t need more houses or more cars. I just want to improve the lives of sarcoidosis patients and their families.”