Sickle cell disease (SCD) is an inherited, lifelong and painful blood disorder in which red blood cells are shaped like crescents instead of discs, restricting blood flow and causing organ damage. According to the Centers for Disease Control and Prevention, SCD affects approximately 100,000 Americans and millions worldwide, and disproportionately affects those of African, Caribbean, Middle Eastern, and South Asian descent.
KeAndra Hickman, from Virginia's Eastern Shore, was diagnosed with SCD at birth.
"I had too many hospital visits to count," says Hickman. "I would wake up in pain most days. Every day, before I put my feet on the floor, I'd reach into my nightstand for medicine."
Extreme pain, known as a pain crisis, is one of the hallmark symptoms of SCD. With frequent hospitalizations, chronic pain and damage to vital organs, people living with SCD often experience a greatly diminished quality of life.
"Physically, I couldn't always do what my friends did, or sometimes just things required to get through the day," says Hickman.
Although long-standing research has shown that bone marrow transplants can cure SCD, most patients lack a perfectly matched donor, making treatment options inaccessible.
That changed for Hickman in September 2022, during Sickle Cell Awareness Month, when Robert Brodsky, M.D., director of the Division of Hematology at the Johns Hopkins University School of Medicine and the Johns Hopkins Family Professor of Medicine and Oncology, visited her community college and spoke about a new treatment option. For the first time, Hickman felt hope.
In a clinical trial led by Brodsky and his team, a reduced-intensity haploidentical bone marrow transplant uses a partially matched stem cell donor, such as a parent, sibling or cousin, to offer a potential treatment for the patient. The approach has proven curative in 90% of adult patients treated, and it is now reshaping what is possible for people with SCD.
"It's very rare for a patient to have a perfectly matched donor, but virtually everyone has a half-matched donor," says Brodsky.
This breakthrough "half-matched" bone marrow transplant therapy is the result of more than 50 years of translational research at Johns Hopkins. It offers a more accessible alternative to traditional high-dose conditioning, which has long limited transplants to younger patients with minimal organ damage. Unlike fully matched transplants or emerging gene therapies, which are often not available to adults with complications, this method is tailored to meet the needs of the broader sickle cell population.
Hickman underwent the half-matched bone marrow transplant procedure in 2022.
"I pursued going through bone marrow transplant because I felt like nothing could be worse than what I faced every day with sickle cell," says Hickman.
Today, she wakes up without needing pain medication. The little things, like taking out the trash or showering without pain, are invaluable, Hickman says. Looking ahead, she hopes to attend college and become an oncology nurse.
"I want to get my story out to help as many people as I can," says Hickman. "I'm now living a life that previous doctors said I never would. I feel like I went through this to help others."
Hickman and Brodsky both share a goal to honor the strength of patients and accelerate awareness of real, life-changing solutions.
"We need to change the paradigm for managing sickle cell disease," says Brodsky. "We've got to educate patients, primary care doctors and parents about this so they don't lose hope, and so we move toward advancing care together."
