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

Kayla Williams: A Sickle Cell Disease Warrior and Advocate

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

Denesha Carter Mitchell: A Sickle Cell Patient and Advocate

Denesha was four years old when her parents discovered that she had sickle cell disease. It wasn’t until the birth of her brother that it was uncovered that both had sickle cell disease. Despite near death crises and obstacles with the medical teams who have been challenged with how to care for her, Denesha remains optimistic and draws on her faith for strength to keep going, not only for herself and her family, but also for the countless number of sickle cell patients who are hesitant to let others know their pain.

“Through the years, even when the pain has felt like glass being jack hammered throughout my body, I’ve stayed strong. I’ve always told myself that I have a purpose in life and there’s a reason why sickle cell landed with me. I’ve resolved that my purpose is to be a voice,” states Denesha. “When I’ve had to stand up for myself when medical treatments have not worked and stood my ground for alternative opinions and courses of treatment, I realized, if I can be strong enough to be an advocate for myself – I can be a voice for others.”

Advocacy for early testing, compassionate medical care, and awareness and motivation for the Black community to be blood donors are all main components to Denesha’s mission in life. “It is the blood transfusions from generous donors, that get me and my brother through the toughest moments and allow us to live. During a near death episode two years ago, I resolved to not only be a voice, but also educate my community and inspire them to donate. Their drops of blood are life for those of us with sickle cell. Blood donors make a difference for our life span,” said Denesha.

Blood transfusion helps patients by increasing the number of normal red blood cells in the body, helping to deliver oxygen throughout the body and unblock blood vessels. A single sickle cell patient can require multiple blood transfusions each year throughout their life to treat complications from this disease.

Denesha, middle, pictured with her parents, siblings and nephews.

“I’m so grateful to have a strong family support network, which includes 11 brothers and sisters and their families. My parents, who check up on me daily, my husband who has stood by me for the past 20 years, my children, and so many other family members and friends who step up to help and be my hands and feet when I’ve been wheelchair bound. I realize that others may not have that type of team rallying for them – I wish to be that support person for someone who doesn’t have it,” said Denesha.

Denesha’s husband has played an integral part of her support system.

Denesha works for the Cook County Forest Preserve and has visions to fully cement an organization that not only supports sickle cell patients, but also commemorates those that lost their life to sickle cell disease and motivates the Black community to be recurring blood donors.

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 Red Cross Blood Donor App or calling 1-800-RED CROSS.

Written by Illinois Communications Manager Connie Esparza

Giving Blood for the First Time

“I had never donated blood before. I was a little nervous, but I feel good, now.”
-Nahum Rabin

24-year-old Nahum Rabin is a Springfield, Illinois resident and recently gave blood for the first time at a local American Red Cross blood drive. His friend had suggested giving blood, after doing so numerous times herself.

“She was just telling me about donating blood; she’s done it a few times in the past,” said Rabin. “After she told me about it, I realized it does help people and it is something good to do, to give back to the community. I decided to do it.”

When asked if he would consider a repeat visit to give blood in the future, here was Rabin’s reply:

“For sure, I would definitely do it again, especially if it could help somebody. It felt like I was only in there for 10 minutes, tops. I’m young, I have enough blood. It’s always good to help somebody.”

Every two seconds, someone in the U.S. needs blood. If you have never donated blood before, here are some resources for you, and a look at what to expect when you go to donate.

Visit redcrossblood.org to make an appointment at a blood drive or blood collection facility near you. Thank you to Nahum and all who give the gift of lifesaving blood!

Written by Illinois Region Communications Manager Brian Williamsen

You May be the Lifeline for Patients with Sickle Cell Disease

The need for blood is constant. We’ve all heard this repeatedly over the years and in crisis shortage levels earlier this year. However, for sickle cell disease patients, blood transfusions are oftentimes part of their routine on a weekly or even daily basis. Now imagine being told that matching blood was not available.

For Cook County Commissioner Donna Miller, this scenario is one she’s been managing alongside her sister who suffers from sickle cell disease for decades. And there have been many instances where her sister was hospitalized waiting for that matching blood supply to help her live. Cook County Commissioner Miller endeavors to address this need so that sickle cell patients don’t have to face this scenario…hopefully ever.

“It has to start at birth with testing to learn whether or not we are sickle cell disease carriers. And we have to talk about this disease and raise awareness at all levels—our communities, our doctors’ offices, our families,” stated Cook County Commissioner Miller. “My sister is 40 years old, and she grew up thinking she would never live to see her adult years. She grew up not knowing anyone else who was living with sickle cell—she felt isolated. For her and all other sickle disease patients I am driven to raise awareness and encourage the African American community to show their support by donating blood.”

Pictured are Cook County Commissioner Miller and her sister, Imani Scott.

The Red Cross is committed to maintaining a diverse blood supply to ensure the right product is available at the right time. Red blood cell transfusions are higher among hospitalized Black patients, yet only about 4% of blood donors are Black. Because some patients are more likely to find a compatible blood match from a donor of the same race or ethnic group, it’s important for individuals of all races and ethnicities to give.

“I invite my African American Community to join the group of recurring blood donors. Your gift gives life,” stated Cook County Commissioner Miller.

Donna Miller is a Cook County commissioner, representing the board’s 6th district.

Let us know you are attending the blood drive. Book your appointment here, https://rdcrss.org/3tgnKnX.

Written by Illinois Region Communications Manager, Connie Esparza

Celebrating Black History Month: Board Member Spotlight on Dr. A. Kyle Mack

February is African American History Month and the American Red Cross pays tribute to the men and women of color who contribute to our humanitarian service – our employees, volunteers and donors.

Dr. A Kyle Mack is a board member and volunteer for the Chicago Red Cross. He is an Attending Physician, Hematology/Oncology at Ann & Robert H. Lurie Children’s Hospital of Chicago.

We are very grateful for Dr. Mack’s contributions to the board and the American Red Cross. He has been a crusader in treating patients with Sickle Cell Disease and a strong proponent of blood donation, particularly within ethnic communities. Dr. Mack and his colleagues started the Blue Tie Tag Program with the Red Cross in the Chicago & Northern IL area which collects and earmarks blood for patients with sickle cell disease who are in need of constant blood transfusions. With high demand and limited sources for these rare blood types, Dr. Mack has reached out to local businesses, faith-based institutions and schools to host blood drives in African-American communities in the Greater Chicago area to match donors with the same blood type as his patients and recruit new donors. His ongoing support has helped the ABC 7 Great Chicago Blood Drive continue to thrive and expand over the last several years.

READ MORE in an article written by Dr. Mack here: https://bit.ly/2CG1cCN

Dr. Mack also donates blood regularly and experienced a moment when he believes his blood came full circle as he followed his donated blood right back to the hospital where he works. Follow his blood’s journey here: https://bit.ly/3ugXQ4R

We are grateful for Dr. Mack’s dedication and willingness to support the Red Cross and encourage blood donation on behalf of the organization. He has regularly spoken to local media and national media to help encourage donors to give and to help answer questions and dissolve myths about giving blood including appearing on national panels as a blood expert.

The need for blood donations has not stopped amid the COVID-19 pandemic. The American Red Cross is facing a national blood crisis – its worst blood shortage in over a decade. Blood donations are critically needed to help prevent further delays in vital medical treatments.

Sign up to make an appointment at www.redcrossblood.org.

Thank you Dr. Mack for your contributions to the American Red Cross!

September is Sickle Cell Awareness Month: Teen Relies on Blood Transfusions to Fight the Pain

Tyler Meeks is just 15 years old and has been dealing with sickle cell disease his whole life. About 100,000 people in the United States have sickle cell disease. Most are of African descent. The disease causes red blood cells to harden and form a C-shape (like a sickle). When hardened, the cells can get caught in blood vessels and cause serious complications for patients. These complications can include severe pain, respiratory conditions, organ failure, and even stroke.

Tyler’s mother Tanika takes him to get a blood transfusion every 4 weeks. She says he has been depending on this blood to help him with the painful side effects of living with sickle cell disease for nearly his entire life. There is no substitute for the blood transfusion, it can only be real blood given by volunteer donors that people with sickle cell disease turn to for help during a pain crisis.

Sickle Cell Disease is an inherited blood disorder that is often found at birth. According to the CDC, sickle cell causes the red blood cells in a person’s body to become C-shaped, like a sickle, instead of the normal round shape and blocks the flow of blood. The effects of this are extreme pain to the person and other severe symptoms.

People with sickle cell disease (SCD) start to have signs of the disease during the first year of life, usually around 5 months of age. Symptoms and complications of SCD are different for each person and can range from mild to severe.

The best match for an African-American child with sickle cell disease usually comes from an African-American blood donor and many patients of sickle cell can require multiple transfusions a year throughout their entire life. To minimize complications, it is best for children with sickle cell disease to receive blood that closely matches their own.

“I am so thankful for those who give blood for the sickle cell patients,” Tanika said. She knows that donors to the American Red Cross can designate their blood for sickle cell patients, something she says leaves her “always smiling.”

There is no widely used cure for sickle cell disease. However, the Red Cross supports one of the most critical sickle cell treatments of all – blood transfusions. For many patients, a close blood type match is essential and is found in donors of the same race or similar ethnicity.

Sign up to give blood at an upcoming Red Cross blood drive and make a difference to the patients in need of blood.

Click here to make your next donation appointment.

September is Sickle Cell Awareness Month. Learn more about Sickle Cell Disease here.

September is Sickle Cell Awareness Month: Mom of 2 Dedicates Her Life to Chronic Disease Research

Beverly Chukwudozie of Evanston is a senior researcher at the University of Illinois Chicago, a mother of two, and living with sickle cell disease.

About 100,000 people in the United States have sickle cell disease. Most are of African descent. The disease causes red blood cells to harden and form a C-shape (like a sickle). When hardened, the cells can get caught in blood vessels and cause serious complications for patients. These complications can include severe pain, respiratory conditions, organ failure, and even stroke.

There is no widely used cure for sickle cell disease. However, the Red Cross supports one of the most critical sickle cell treatments of all – blood transfusions. For many patients, a close blood type match is essential and is found in donors of the same race or similar ethnicity.

Beverly credits blood donation to saving her life several times. She says blood donation is “a gift that keeps on giving,” as it helps to alleviate some of the painful symptoms of sickle cell disease. Currently Beverly works at the University of Illinois Cancer Center as a researcher in cancer and health disparities and holds Master’s Degrees in Public Health and Business Administration.

She continues to be an advocate for people with sickle cell disease like her, and encourages others to give blood.

“I am alive today because I could get a transfusion,” she said reflecting on the times blood has helped to save her life and the some 30 transfusions she’s had in her life.

She adds, “Blood transfusion is a life-saving gift, but the receiver does not get an opportunity to thank the giver or share the impact of this precious gift. Thank you to everyone who donates blood, as it is a necessary treatment for many health conditions.”

Sign up to give blood at an upcoming Red Cross blood drive and make a difference to the patients in need of blood.

Click here to make your next donation appointment.

September is Sickle Cell Awareness Month. Learn more about Sickle Cell Disease here.