Motivated by Pain

“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

A Sickle Cell Warrior’s Plea for Continued Blood Donations

Ashley Morgan was 3.5 months old when she was diagnosed with sickle cell disease and received her first lifesaving blood transfusion when she was 5.5 months old. Hundreds of transfusions later and crises that have necessitated having to relearn how to walk amongst other everyday activities, Ashley remains hopeful that one day, sickle cell awareness will be broader and support for her and her fellow warriors will be more widespread.

“We [sickle cell warriors] live with pain, pain so excruciating that it sends us into crisis. Crises brought on by simple acts of everyday living like season changes, weather, and enjoying what we like to do. And these crises last days—sometimes weeks. My wish is that one day our advocates’ voices will be louder, stronger, and larger in number. That those voices will be so loud that everyone will hear our plea for continued blood donations. I’ve survived because of the hundreds of transfusions I’ve received in my lifetime and like me, there are thousands more sickle cell warriors who count on that blood supply to help ease the pain.”

Despite the incredible challenges she has faced over her lifespan, Ashley smiles and relishes in the warmth of her circle of friends and family who support her daily. “I am so blessed to count on family and friends who are there for me every step of the way and show up when I can’t leave my bed, but so many sickle cell warriors are forging on in quiet. We need to be there for each other. Understand the disease. Understand what helps us through it and that in a very large way, the gift of donated blood makes such a difference in our lives.”

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. The blood that runs through our veins can ease the suffering of others — and patients battling sickle cell disease need your help now. Please schedule a blood donation appointment today by visiting RedCrossBlood.org, using the Blood Donor App or calling 1-800-RED CROSS.

“I am working on continuing to stand strong in my faith and being well enough to host blood drives. In the meantime, I implore my Black community to donate blood. For me, the generosity of blood donors has allowed me to live almost since birth, and, like me, there are thousands who need the kindness and love of blood donors.”

Written by Illinois Communications Manager Connie Esparza

A Sickle Cell Patient’s Plea to Her Community

Over 500 hospital stays and countless blood transfusions and exchanges in her lifetime that she’s lost count, Jasmine has one goal in mind these days—to make it one complete year without having to be hospitalized. A mother of a 4- and 11-year-old, both who are also sickle cell trait carriers, she has much to live for and motivation to raise awareness for sickle cell disease, a disease she has lived with since birth, and desire to encourage her family and friends to be donors.

“At birth, my mother was told I had the sickle cell trait. My mother didn’t think much of it, and all was well until my brother was born and he tested positive for sickle cell disease. That’s when she [mother] had me retested and I too came back positive for sickle cell disease. After that, my mother’s journey included constant trips to the emergency room. When it wasn’t my brother, it was me in one crisis or another, but always, the both of us needing treatment which included blood transfusions,” recalled Jasmine

Thirty-two years later, Jasmine continues to fall into crisis, especially during weather changes. The one constant has been her mother who has stood by her without complaining or tears. “My mother was a single mother and many times she had to choose her job over being there for me when I’ve been in crisis. While she came close many times to losing her job, my mother stood by me and made sure I received the care I needed no matter how long it took,” said Jasmine. And many times, recovery was prolonged because of the lack of blood on the shelves that Jasmine desperately needed to help alleviate her pain.

“From the bottom of my heart, I appreciate all blood donors. Because of them, I’ve been able to pull through the worst of my crises—even those where I’ve coded, and my family thought I was not going to make it back. But donations are needed constantly. To my Black community—family and friends—your blood is needed for sickle cell patients like me. Your blood saves lives. Your blood has saved me,” stated Jasmine.

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. Foe sickle cell patients, regular blood transfusions are critical to manage extreme pain and life-threatening complications.

Please schedule a blood donation appointment today by visiting RedCrossBlood.org, using the Blood Donor App or calling 1-800-RED CROSS.

Written by Illinois Region Communications Manager, Connie Esparza