“Sickle cell disease is the best thing that happened to me — I know people are shocked when I say that. Even though I wouldn’t wish this disease and its complications on anyone, I discovered my life purpose in dealing with my pain. I’ve set out to ensure that current and future sickle cell patients do not have to live with the hardships and misunderstanding of living with this disease alone and that understanding what blood donations do for my fellow sickle cell warriors is more widespread.”
Northern Illinois University Ph.D. candidate, Ronisha Edwards-Elliott is a Sickle Cell Disease Professional Patient Advocate and Pediatric Sickle Cell Program Developer with the University of Illinois in Chicago (UIC). At one point, determined to be a doctor, Ronisha realized that you don’t have to be a medical doctor to impact the lives of sickle cell disease patients, “With my studies, I set out to research and understand the barriers of treatment and the burden of care for sickle cell disease patients. That led me to my sickle cell career and assisting with the formation of pediatric to adult group care programs. These group care programs help young people transition from pediatric to adult care which is a high-risk mortality time for patients because they are taking ownership of their care.”
Continues Ronisha, “The caregiver who may have been making sure that prescriptions are filled and taken and that made sure doctor’s appointments were met is no longer. Teaching young adults that their well-being and care are now in their hands is one of the most gratifying things I get to do in my role. I didn’t handle the transition from child to adult care very well and now I get to make sure others don’t make the same mistakes I did.”
Ronisha managed sickle cell disease during her youth mainly with just the care of her immediate family. Friends and teachers never knew that Ronisha managed her days through the pain and would claim to be on vacation when in fact she had been in the hospital managing a pain crisis.
“A combination of things led me to not share my condition with anyone until just 10 years ago. Lack of awareness and support from doctors and teachers, to just being a young person who didn’t want to be hindered from doing things or get singled out — I dealt with it quietly and not always well. My hope is that I can be that resource for other sickle cell patients so they don’t feel misunderstood and unsupported.”
Among her many goals, Ronisha is a steadfast advocate that encourages blood donors from diverse groups even though she has been unable to receive blood to manage her own pain. “There have been instances where I have wished for blood transfusions. Unfortunately, they are not a part of my treatment regimen due to the risk of iron overload but, if my life was ever in jeopardy, I too would be dependent upon a blood transfusion despite what those risks may be for me specifically. My fellow sickle cell warriors’ lives depend on donated blood and it pains me to see the lack of blood donors from minority communities. I can attest to what donated blood does for a sickle cell patient especially if that blood comes from a blood donor whose ethnicity matches that of the patient. We need our Black and Brown communities to be blood donors in larger numbers.”
Ronisha greets each day as another chance to not have sickle disease define her. Instead, Ronisha endeavors to stand firm for and with fellow sickle cell warriors by way of the work she counts herself lucky to do every day. She encourages Black and Brown communities to give the gift of life by donating blood. “Blood donations are a matter of life or death for sickle cell patients like me and so many others living with a chronic illness.”
Blood transfusions are a treatment for those with sickle cell disease, and diverse donors play a big part in helping those with this genetic blood disease. The Red Cross encourages people of all races and ethnicities to donate blood to help ensure the right blood product is available for those in need.
Eligible individuals are encouraged to schedule a blood or platelet donation appointment by using the Red Cross Blood Donor app, visiting RedCrossBlood.org, or calling 1-800- RED-CROSS (800-733-2767).
Written by Illinois Region Communications Manager, Connie Esparza