Sickle cell survivor and advocate, graphic artist, “mother, sister, daughter”
Her story: At six months of age, Deidra Flowers-Williams was diagnosed with sickle cell disease (SCD). The next four decades of her life were a tale of emergency room visits and long hospital stays, framed by constant, debilitating pain. By 2015, prostrate with the pain, unable to walk from her bed to the bathroom, Flowers-Williams grasped firmly at a last straw: a National Institutes of Health (NIH) clinical trial testing the use of stem cells to cure sickle cell in adults. She was patient #43 in the trial.
On September 9, 2015, she tweeted a picture (link is external) of herself undergoing a blood transfusion with the caption: “One day this will no longer be my life! #SickleCellAwareness.” Two months later, on November 19, that day came: She received an experimental stem cell transplant and is now free of SCD.
Unimaginable hurdle: As a child, “I loved to be involved in certain activities, like swimming, but they would trigger a sickle cell crisis. If I stayed in the pool for too long, I would go into a painful crisis and be in the ER that night.”
How she survived: “As a person living with sickle cell disease, you learn to compensate and adapt to the continuous changes in your life. Your pain tolerance increases, but my will to live as close to a ‘normal life’ as possible grew as well. I always had a great support system with my family and friends.”
Her dream: “My biggest dream now is to live life to the fullest and not waste a drop of it! I want to participate in living! It’s the small things, the everyday things that are important to me. Every day it feels like a new beginning, and I’m joyful in it.”
“Look at that! Life!” Flowers-Williams said, as she held the tube with the stem cells, which were donated by her sister, Tanisha Flowers, “When I learned that my sister was a 100% match, I just knew that NIH was where I needed to be. I felt so much hope that I was going to live a new chapter in my life, free of the chronic pain, the narcotics, the IV pricks, the sickness, the constant ER visits ... just free from all the life disruptions that SCD can bring. I was so excited and fearful at the same time.”