A clinical trial using a double ni-cord cord blood transplant cured her of sickle cell disease and opened new doors to a healthy future. . . meet Sosa Evbuomwan
When you see Sosa Evbuomwan enter the room, you are instantly struck by her presence. Immediately, you feel her her enthusiasm for life, her welcoming spirit and an electric positivity! She is always looking forward to the next challenge, driven by incredible confidence and vision. Her energy is contagious! You would never guess in a million years that this young woman grew up fighting a severe case of sickle cell disease and struggled with it most of her childhood. And then, . . . she tells you "I was cured."
Disbelief. Speechless. This is the common reaction.
You are forgiven for having doubts. But, it is true. This striking, intelligent young lady used to have sickle cell anemia.
For the first 12 years of her life, Sosa fought the disease. She and her family went to great lengths to make sure that she received the best treatments possible. She suffered through pain crisis and a long list of complicated health issues. Ultimately, her doctors recognized that her body was risking severe and potentially debilitating damage following a series of mini-strokes. A stem cell transplant was recommended. But, where would the stem cells come from? Bone marrow? No, cord blood.
We recently sat down with Sosa to talk about her experience growing up with sickle cell and how an innovative clinical trial changed her life forever.
What was it like growing up with sickle cell anemia? How did it affect your daily life?
Growing up with sickle cell was difficult. I would experience pain crises, especially in my legs, and would try to keep my medical and school life separate due to the lack of awareness about sickle cell disease to young children. I didn’t want anyone to treat me differently just because I had this disease. There was a period where every month I had to have blood transfusions and I would come back to school with big bandages and say “I just had shots.”
At what point and why did your doctors recommend a cord blood transplant?
It was discovered that I had suffered multiple mini strokes in my brain with no physical effect. My doctors were afraid that a bigger stroke that could cause greater damage was immanent, so finding a solution was vital.
What does your future look like? What path (or paths) are you building for yourself currently? In 10 years, 20 years... who will Sosa be?
My hope is that I am proud of myself! I find myself taking on new challenges right now (like my pageant!) and doing things that excite me. I hope that I have been able to fulfill my desire to do more public speaking and inspire people with my story. Currently, I am working towards applying to medical school, but understand how life can change in the blink of an eye! Nonetheless, I am excited for what that future may be!
Shooting for the stars!
Register now for the 8th Annual Arizona Cord Blood Conference! This conference is a unique opportunity for healthcare professionals, parents, students and the general public to learn about cord blood stem cells directly from world-leading experts.
Join us on April 13th, 2023 at the ASU Scottsdale Innovation Center and discover how cord blood is used to treat 80+ life-threatening diseases including many cancers like leukemia and lymphoma. See the full agenda below.
The purpose of this one-day conference is to bring patients, researchers, clinicians, and policy makers together to learn about advances in cord blood transplant outcomes, cutting edge research, and exciting new innovations using donated cord blood in treating leukemia, lymphoma, cerebral palsy and more.
John Garcia, Director of the Arizona Public Cord Blood Program, sponsors of this event, said, "The 8th Annual Arizona Cord Blood Conference brings together physicians, researchers, and transplant survivors to share information on the latest in cord blood stem research and share stories of survival. It's miraculous that by using blood from umbilical cords and placentas, that would normally be discarded after birth, hope is given for cures and treatments for over 80 diseases. This is truly a life-saving gift where mothers give birth to new life and save another life with the blood from her baby's umbilical cord."
Expand Access to Stem Cell Transplants with Cord Blood
This year’s conference will place an emphasis on cord blood’s critical role in increasing diversity of donors on public stem cell registries. In addition, speakers will explore cord blood’s unique advantages versus other stem cell sources. Special attention will be given to innovations in cerebral palsy and spinal cord injury research using cord blood.
The conference will also reinforce the growing network supporting the Arizona Public Cord Blood Program, a free cord blood donation program available to Arizona families and made possible by the Arizona Biomedical Research Centre at the Arizona Department of Health Services.
"Bridging the Diversity Gap,
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