As an infant, Kayla’s parents tell her she would cry incessantly and noticed her feet and ears were continually swollen. Doctors’ visits weren’t very helpful, and they usually ended with them prescribing pain medication and getting sent on their way. Finally, one doctor ordered extensive blood work and the cause was identified — Kayla had sickle cell disease traced to her parents who did not know they are sickle cell trait carriers. Her parents quickly familiarized themselves with what sickle disease is and how to advocate on behalf of their daughter to her doctors.
“I’ve managed my sickle cell disease with the help of my parents who have been my biggest advocates since my diagnosis and doctors who were kind and patient and taught me how to listen to my body and know how to read and manage my hemoglobin and fluid levels,” states Kayla.
Blood transfusions have been necessary for Kayla and it’s these transfusions that alleviate the pain that many sickle cell patients describe as glass chards being hammered repeatedly throughout their body.
“Know your body and be your biggest advocate.” Kayla Williams
“I work every day to avoid a crisis. Knowing my body and what triggers a crisis are always top of mind for me. Luckily, the root of my health problems was discovered early on, and my parents connected wth medical providers who were not only compassionate, but also, patient enough to teach me about a disease I would have to work to manage all of my life,” states Kayla.
Sickle cell awareness is a journey and one that Kayla wishes to impact through Kay’s Korner, a foundation she established during the pandemic. “While in college, I searched for a sickle cell organization where I could work to support pediatric patients and their families just like me and my parents had been when I was diagnosed, and I just couldn’t find one. I realized that I could be that organization. I’m so grateful to family, friends, and hospital partners who work with Kay’s Korner an organization I established so that children with sickle cell disease learn about the disease they are living with and how they can transition to adulthood just like I and other sickle cell patients have done.”
Kayla credits her parents who quickly went into action to connect her with care and with medical facilities dedicated to pediatric sickle cell care which is so different from adult care. Because of this Kayla was able to grow and flourish in the company of other children living with sickle cell disease.
One in 3 African American blood donors are a match for people with sickle cell disease. To help ensure patients have the blood products they need, the American Red Cross is working with partners in the Black community to grow the number of blood donors who are Black.
To learn more, visit RedCrossBlood.org/OurBlood.
Written by Illinois Communications Manager Connie Esparza