Blood donation and patient advocate, sickle cell survivor
Her story: When she was 3 years old and still living in Central Africa, in Gabon, doctors diagnosed Elodie Ontala Babongui with sickle cell disease. Not long afterwards, her family immigrated to the United States, and now, at age 31, Ontala can tell a decades-long story of both pain and triumph. A resident of Milwaukee, Wisconsin, she has endured multiple challenges with sickle cell disease, including frequent pain crises as a child and a temporary loss of vision in one eye due to a stroke. Yet she refuses to let the disease keep her from living. She has earned both a bachelor’s and master’s degree, and has learned four languages, including French and Chinese. These days she puts her skills and experience to work as a patient advocacy liaison for the Versiti Blood Center, where she helps connect patients living with sickle cell disease to community resources. She also educates people about the importance of blood donations.
Inspiration: “My family is my biggest motivator. They do a really good job of pushing me and making me happy and being supportive. They always show up and have always understood. They’ve never questioned my pain when I was sick.”
Turning points: “I feel like I’ve had many in my life. I had a stroke in my left eye in 2017. It was disruptive and heartbreaking, but I was able to get back up and live again. But the major turning point was in 2019, when I was told I had small vessel disease in the brain and an MRI revealed bleeding and tiny strokes. It was a wakeup call. I was getting too comfortable in how stable I was. The MRI indicated that the disease was still doing damage.”
What excites her: “Doctors encouraged me to try a bone marrow transplant while I’m still young and able to recover from such a big treatment. A transplant would mean no more progression of the disease and no more transfusions.” Ontala is tentatively scheduled to undergo a bone marrow transplant at the Medical College of Wisconsin in September 2021. Her father will be her bone marrow donor.
Her call to action: “Right now, there’s an urgent need for blood across the country. My call to action is for everyone to donate blood as often as they can. You’re saving the lives of not only sickle cell patients but everyone who needs it in trauma situations. It’s especially important for African Americans and other people of color to donate. It increases the likelihood of finding matching blood types, and people on the waiting list for blood are often Black and Brown people.”