"I always knew I had this condition that no one else around me had," says Tatyana Thompson, who has sickle cell disease. "Growing up, I knew it was important to make sure my friends and people around me understood what to do if I had a pain crisis, when to call an ambulance. That was my life."
Sickle cell disease (SCD) is a lifelong, inherited blood disorder that causes red blood cells to form a crescent shape instead of a round disc. These misshapen cells restrict blood flow, leading to severe pain and potential organ damage. The Centers for Disease Control and Prevention estimates that about 100,000 Americans and millions more worldwide live with SCD. Observed in September, Sickle Cell Awareness Month highlights the urgent need for better treatments and greater understanding of the disease.
Thompson, of Columbia, Maryland, was diagnosed with SCD at 2 months old. Raised by a single mother alongside her younger brother, she spent countless days and nights in hospitals. As she grew older, the fear of a pain crisis continued to overshadow daily life.
"Everything I did revolved around being close to hospitals," says Thompson. "Sickle cell makes you second-guess every decision, even vacations. If I went on a cruise with my family, I knew I'd end up in the hospital the next day. My joy was stolen all the time."
When Thompson became pregnant in 2022, she had to stop taking her medication used to control pain caused by SCD. Her pregnancy was marked by months of hospitalizations and pain crises. After her son was born, the pattern continued: extended hospital stays robbed her of precious moments.
"I missed my son's first time crawling and other important milestones because I was in and out of the hospital," says Thompson. "My family and I knew we had to try something new."
The turning point came during another extended stay at The Johns Hopkins Hospital, when Thompson saw a news story about new research on SCD treatments. When she asked her doctor about new treatment options, Thompson learned about a "half-matched" bone marrow transplant.
As reported in the clinical trial, the breakthrough "half-matched" bone marrow transplant is built on more than 50 years of research at the Johns Hopkins Kimmel Cancer Center. Unlike traditional high-dose conditioning, which historically limited transplants to younger patients with minor organ damage, this approach uses a partially matched donor, such as a sibling, parent or cousin.
"Unlike fully matched transplants, which are often out of reach for adults with complications, this method is designed to meet the needs of a much broader sickle cell population," says 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. "With a half-matched donor, like in Tatyana's case, we've seen curative results in about 90% of patients."
In July 2024, Thompson underwent her transplant using stem cells from her younger brother, Dakota.
"He's been there through everything," says Thompson. "When I was a kid getting transfusions, he'd ask to skip school just to come with me. Being my donor was so real for Dakota. We're best friends."
On Aug. 29, 2024, she rang the bell at the Johns Hopkins Kimmel Cancer Center inpatient/outpatient clinic. A DNA test confirmed Thompson's SCD was gone.
"It was like a weight lifted," says Thompson. "For the first time in my life, I wasn't stressed about this huge thing hanging over me. It was over."
Life after transplant has been filled with firsts. Family trips no longer end in the hospital. After ringing the bell, Thompson went on vacation with her family and enjoyed every waterslide without fear of pain. Visiting Disney World with her son, a feat once unthinkable due to the physical strain on her body, was now possible.
"This was a family effort," says Thompson. "We all fought for this together. My support system was everything."
Thompson wants her story to empower others to envision their life beyond SCD.
"Keep advocating for yourself," says Thompson. "There are new, great treatment options out there. Keep asking, keep fighting. The challenge of the transplant is nothing compared to living with this disease day to day."
