Sosa Evbuomwan: Cured of Sickle Cell Thanks to Cord Blood

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.

Sosa and her family

​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.

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Was this part of a clinical trial? If so, tell us about the decision making process for you and your family at this time.

Yes! I am the first pediatric patient in the world to be cured of sickle cell disease via double ni-cord cord blood transplant. This was actually my second transplant because my first one in 2011 did not work. Additionally, sickle cell was still deemed “uncurable” at the time. I know it was scary for my parents to put me in that position again, but they stepped out on a lot of faith. Today, I strive to do things with as much faith as they have!

At what point did you know that the cord blood transplant had worked? How did that make you feel? How did you begin to rebuild your life, your childhood? 

We knew the transplant worked when the doctor told my mom that my new cells had taken 99.9% of my body. I remember her holding the paper, gowned up, and just seeing this calm and grateful expression on her face. I think she outwardly expressed her emotions after she left the room as she went to go notify everyone! 

You have experienced so much in such short amount of time. However, you have clearly taken these experiences and used them to make you stronger, not only healthwise, but also emotionally. You have been and continue to be someone who is wise beyond her years. What is your advice to others facing similar challenges? 

My hope is to be an inspiration for others who find themselves not just in situations similar to mine, but for anyone facing some form of adversity or a season of challenges. I am blessed to say I don’t look like what I have been through and want to encourage everyone that while you may be facing trials now that it will pass. You do not have to wear the challenges that life has thrown at you and I challenge you to strive to be your absolute best after life has tried to knock you down to your worst.

Sosa Evbuomwan, Cord Blood Transplant Recipient

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!

Thank you to Sosa for expanding cord blood awareness via the Miss North Carolina USA 2023 competition! 

Cord blood has given Sosa a second chance at life and she is shooting for the stars!  

In February 2023, Sosa competed in the Miss North Carolina USA pageant and used this opportunity to help expand awareness by getting the word out about cord blood and how it cured her of sickle cell disease.

Sosa is living proof why we need to talk more about this incredible medical resource. We need to build awareness and continue to push forward important medical research using cord blood for sickle cell anemia and more. Sosa is giving an important voice to the cord blood movement and showing in real time how a simple gesture after the birth of a child can save a life. Her message for parents and healthcare professionals is simple. . . Save the Cord!