A Rochester woman who was born with sickle-cell anemia has been cured of the disease after a bone marrow transplant at the University of Rochester Medical Center.
It was the first such transplant for sickle-cell anemia at URMC in nearly a decade.
“It’s a horrible disease and I don’t wish it on anybody. Your body just breaks down with no warning,” said Stephanie Ramos, 25, of Irondequoit. “But to be free of it, words can’t really explain how I feel.”
Ramos had fought sickle-cell anemia for her whole life, enduring complications and hospital visits whenever the disease would flare up. Her transplant took place in August 2014; she has now been disease-free for five months and her doctors believe she has cleared all major recovery hurdles.
A bone marrow transplant is the only known cure for sickle-cell anemia, a hereditary blood disorder that causes red-blood cells to take on a rigid, sickle-shaped form that can lead to severe infections, pain, and stroke. On average, patients with sickle cell in the United States only reach their mid-40s.
But transplants are extremely rare due to a dearth of registered donors and the risks associated with the chemotherapy that is necessary for the procedure.
For Ramos, the push to explore a transplant started three years ago, when the disease began attacking her ankles. As she lost her ability to walk, she dropped out of college and was unable to work. With her quality of life diminishing, her UR Medicine Primary Care physician, Tiffany Pulcino, M.D., brought her case to the Sickle Cell Working Group — a group of other sickle-cell specialists at UR Medicine including Suzie Noronha, M.D. — to discuss possible options for Ramos.
That led to a conversation between Ramos and Jeff Andolina, M.D., a pediatric hematologist/oncologist at Golisano Children’s Hospital, who suggested finding a potential bone marrow donor. Ramos’s family members began getting tested, and her twin brother, Jordan, was a perfect match.
“I knew what could happen with the chemo, but I thought it was worth a shot,” said Ramos. “Because what’s the point of fighting and working every day when you feel like your body is giving up on you?”
Andolina performed the transplant, and he and Pulcino have monitored Ramos since then. Ramos said that her family and her strong faith were the two biggest keys to her recovery.
Now, Ramos is hoping to spread awareness of sickle-cell anemia — which affects a disproportionately high number of minorities, especially those of African descent — and encourage people to register as bone marrow donors.
For more information on becoming a bone marrow donor, visit www.bethematch.org.