A Family's Triumph: Bone Marrow Transplant at Johns Hopkins Empowers Life Beyond Sickle Cell Disease
The Johns Hopkins University Medical System shared recently a Maryland woman's experience with sickle cell disease (SCD) and her successful "half-matched" bone marrow transplant.
Tatyana Thompson, diagnosed with SCD at two months old, spent years managing debilitating pain and unpredictable crises that severely impacted her quality of life. She stated, "I always knew I had this condition that no one else around me had. 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." The fear of a crisis dictated her daily decisions, even preventing her from enjoying simple pleasures such as vacations. "Everything I did revolved around being close to hospitals," Thompson recounted. "My joy was stolen all the time."
SCD is a lifelong, inherited blood disorder in which red blood cells form a crescent shape, restricting blood flow and causing severe pain and organ damage. The Centers for Disease Control and Prevention estimates that approximately 100,000 Americans and millions worldwide live with SCD. September is Sickle Cell Awareness Month, highlighting the critical need for improved treatments and understanding of the disease.
Thompson's struggle intensified during her pregnancy in 2022 when she had to discontinue her pain medication, leading to months of hospitalizations. After her son's birth, extended hospital stays continued, causing her to miss crucial milestones. "I missed my son’s first time crawling and other important milestones because I was in and out of the hospital," she shared. "My family and I knew we had to try something new."
A turning point occurred during a stay at The Johns Hopkins Hospital when Thompson learned about new SCD research, specifically the "half-matched" bone marrow transplant. This breakthrough, developed over 50 years of research at the Johns Hopkins Kimmel Cancer Center, offers a vital alternative to traditional transplants by utilizing a partially matched donor, such as a sibling, parent, or cousin. Dr. Robert Brodsky, director of the Division of Hematology at the Johns Hopkins University School of Medicine, explained, "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. With a half-matched donor, like in Tatyana’s case, we’ve seen curative results in about 90% of patients."
In July 2024, Thompson received her transplant with her younger brother, Dakota, as her donor. She described their bond: "He’s been there through everything. 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 August 29, 2024, Thompson rang the bell at the Johns Hopkins Kimmel Cancer Center, celebrating the confirmed eradication of her SCD through a DNA test. "It was like a weight lifted," she said. "For the first time in my life, I wasn’t stressed about this huge thing hanging over me. It was over."
Since her transplant, Thompson's life is full of "firsts." Family trips no longer conclude in the hospital, and she can now enjoy activities such as waterslides and even visit Disney World with her son—experiences once deemed impossible due to her condition. She emphasized, "This was a family effort. We all fought for this together. My support system was everything."
Thompson hopes her story encourages others with SCD to advocate for themselves. "Keep advocating for yourself," she urged. "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."
Tatyana Thompson, diagnosed with SCD at two months old, spent years managing debilitating pain and unpredictable crises that severely impacted her quality of life. She stated, "I always knew I had this condition that no one else around me had. 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." The fear of a crisis dictated her daily decisions, even preventing her from enjoying simple pleasures such as vacations. "Everything I did revolved around being close to hospitals," Thompson recounted. "My joy was stolen all the time."
SCD is a lifelong, inherited blood disorder in which red blood cells form a crescent shape, restricting blood flow and causing severe pain and organ damage. The Centers for Disease Control and Prevention estimates that approximately 100,000 Americans and millions worldwide live with SCD. September is Sickle Cell Awareness Month, highlighting the critical need for improved treatments and understanding of the disease.
Thompson's struggle intensified during her pregnancy in 2022 when she had to discontinue her pain medication, leading to months of hospitalizations. After her son's birth, extended hospital stays continued, causing her to miss crucial milestones. "I missed my son’s first time crawling and other important milestones because I was in and out of the hospital," she shared. "My family and I knew we had to try something new."
A turning point occurred during a stay at The Johns Hopkins Hospital when Thompson learned about new SCD research, specifically the "half-matched" bone marrow transplant. This breakthrough, developed over 50 years of research at the Johns Hopkins Kimmel Cancer Center, offers a vital alternative to traditional transplants by utilizing a partially matched donor, such as a sibling, parent, or cousin. Dr. Robert Brodsky, director of the Division of Hematology at the Johns Hopkins University School of Medicine, explained, "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. With a half-matched donor, like in Tatyana’s case, we’ve seen curative results in about 90% of patients."
In July 2024, Thompson received her transplant with her younger brother, Dakota, as her donor. She described their bond: "He’s been there through everything. 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 August 29, 2024, Thompson rang the bell at the Johns Hopkins Kimmel Cancer Center, celebrating the confirmed eradication of her SCD through a DNA test. "It was like a weight lifted," she said. "For the first time in my life, I wasn’t stressed about this huge thing hanging over me. It was over."
Since her transplant, Thompson's life is full of "firsts." Family trips no longer conclude in the hospital, and she can now enjoy activities such as waterslides and even visit Disney World with her son—experiences once deemed impossible due to her condition. She emphasized, "This was a family effort. We all fought for this together. My support system was everything."
Thompson hopes her story encourages others with SCD to advocate for themselves. "Keep advocating for yourself," she urged. "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."
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