Living life to the fullest even with Sickle Cell Disease

“You can’t imagine it unless you’re actually dealing with it.”

Sherrell Johnson was diagnosed with Sickle Cell disease at 6 months old, a blood disorder that affects about 100,000 people in the United States- most of which are of African descent. But before the diagnosis, her mother faced months of a screaming, crying baby that doctors dismissed as being just that- a fussy baby.

After more medical visits, it was determined that she had Sickle Cell, a disease that 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 called a “pain crisis,” respiratory conditions, organ failure and even stroke.

Even with the diagnosis, Sherrell’s mother didn’t know much about Sickle Cell disease and her daughter faced a childhood full of being in and out of the hospital as the family tried to care for Sherrell as best as they could with the limited information available to them.

Originally from Chicago, Sherrell attended Western Illinois University for college and remembers a particularly cold day when she was in so much pain she couldn’t make it to the dorm dining hall and ended up back in the hospital where she was misdiagnosed with bronchitis. For the rest of her college career, Sherrell found herself being hospitalized about once a semester.

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. It was during college that she started having more frequent blood transfusions to help ease the tremendous pain caused by Sickle Cell.

In her junior year of college, a bone infection forced her to temporarily use a wheelchair and triggered even more pain crises. At this point, Sherrell was getting transfused every single month and continues to get transfusions today. Living with Sickle Cell has made nearly every aspect of her life more challenging and prevented her from doing some things she loves, like traveling.

Through the ups and downs of having Sickle Cell, Sherrell has had to learn how to carry on with her life in spite of the pain she’s feeling. This was especially difficult while working in the retail industry with long hours on her feet and doing very physical work. At the onset of the COVID-19 pandemic, she faced more misunderstanding from her peers and colleagues and had a rough turn with the virus when she caught it herself, being already immunocompromised. Even with Sickle Cell holding her back, she’s proud of what she’s accomplished in her life already and continues to work to raise awareness about the disease through her own brand, Sickle Cell Diva.

“I just want people to know that they may not even know when someone has it,” Sherrell said. “We’re living our lives to the fullest and not letting Sickle Cell control us.”

Today at age 43, she is living in Orland Park and happily working full-time remotely for Discover Financial but still gets sick and finds herself back in the hospital 2 or 3 times a year and still needs blood transfusions every few months. Even with advancements in medications, blood transfusions continue to be a critical treatment for her and others with Sickle Cell. For many patients, a close blood type match is essential and is found in donors of the same race or similar ethnicity so having a diverse blood supply is important so it’s there for patients when they need it. Having blood available helps patients like Sherrell live life to the fullest.

“Don’t count us out,” she said. “I think people count us out too much. We’re more than our diagnosis.”

Written by Illinois Communications Manager Holly Baker

Young journalist strives to share her story and others’ through lifetime battle with Sickle Cell disease

“How I explain Sickle Cell to people is other people’s blood cells are shaped like circles and mine are shaped like Cs,” Tiffani Jackson explains while reflecting on her life living with Sickle Cell Anemia (SS.) 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.

Tiffani is originally from Detroit and was diagnosed at birth with the disease as both of her parents carried the Sickle Cell trait. It ended up greatly interfering with most of her childhood; being in and out of the hospital frequently, missing a lot of school, facing bullying from peers who did not understand, and the constant fear and pain that comes with having the disease.

The extended hospital stays and uncomfortable school environment ultimately led Tiffani to be homeschooled until she enrolled at Grambling State University in Louisiana. She planned to pursue her degree and also enjoy the benefits of living in a warmer climate than Michigan as cold temperatures often contributed to her ending up in the hospital in a pain crisis. Conversely, being dehydrated in the Louisiana heat also created health problems for Tiffani, coupled with the stress of college and everyday life.

It was during her college days that she started receiving oxygen and blood transfusions as a treatment for Sickle Cell which is one of the most critical treatments for people living with the disease, for which there is no cure. For many patients, a close blood type match is essential and is found in donors of the same race or similar ethnicity.

“Blood transfusions are really the thing that helped me stay out of the hospital for a while,” she said, counting at least seven instances of needing blood during that time.

Through the many hospitalizations and obstacles that come with living with Sickle Cell disease, Tiffani continued to beat the odds and have big goals for her life regardless of what doctors told her.

“Its hard for a person with Sickle Cell to dream big because you’re told you might not live long. You have so many restrictions, but your drive has to be bigger than people’s estimations on your life,” she said.

After transferring to Illinois State University, Tiffani got involved in her major of Journalism by joining the campus newspaper and even created her own news outlet: Onyx Connect with the goal of sharing positive stories about people of color. Her entrepreneurial spirit got her noticed by NPR, who recruited her as a paid student intern. Tiffani worked multiple jobs, juggled school and dealt with her Sickle Cell disease, even working on her laptop from a hospital bed if she had to.

Her real-world work experience ultimately helped her land a full-time job as a culture, diversity, and inclusion reporter with the State Journal-Register in Springfield, IL even before graduating in the Spring of 2022.

Now at age 24, and still dealing with Sickle Cell disease, she’s determined to continue pursuing her dreams.

“I have this mindset that regardless of what I have, I have my mind made up on what I’m going to do….and having that mindset is what got me to where I am right now.”

She plans to continue growing her journalistic skills and dreams of building her own collegiate news network to inspire young African American students and share their stories no matter what challenges they face.

“I hope that my journey with Sickle Cell inspires other people who have it to aim higher regardless of what other people say.”

The American Red Cross has launched a new national initiative to reach more blood donors who are Black to help patients with sickle cell disease.

The Red Cross asks members of the Black community to join with us and our partners to help meet the needs of patients with sickle cell disease and other medical conditions to improve health outcomes. Please take action today and schedule a blood donation appointment by visiting RedCrossBlood.org, downloading the Blood Donor App or calling 1-800-RED CROSS.

Written by Illinois Red Cross Communications Manager Holly Baker

September is Sickle Cell Awareness Month: College Grad Lives Life Fully Even with Sickle Cell Disease

As a child, Lyric Porter always knew her life would be a bit different than those around her due to being diagnosed with sickle cell anemia as a baby. Sickle cell anemia causes red blood cells to become hard and sticky and look like a C-shape, or a “sickle” rather than the normal round, healthy blood cells. According to the CDC, the sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such infection, acute chest syndrome and stroke.

Because of this diagnosis, Lyric says she didn’t always have the “privilege of being average” and remembers rolling a traveling oxygen tank with her to kindergarten and a compilation of other memories comprising a childhood strikingly different than most of her peers. That includes hospital stays and regular blood transfusions to manage the intense pain caused by sickle cell anemia.

A glimpse of Lyric’s many hospital visits including one NYE due to sickle cell anemia.

She went to a children’s hospital and even sickle cell camp where she saw other kids held back from life and activities due to sickle cell anemia. Seeing this, Lyric made sure to still try and do all the things regular kids did like playing sports, taking dance classes and more.

She is now a 20-something college graduate living life to the fullest in spite of a lifetime of pain and struggle with the disease. Raised in Chicago’s Roseland neighborhood, she ventured to Florida A&M for college earning a degree in Broadcast Journalism in 2019.  

Now she continues to be an advocate for sickle cell warriors, and encourages others to donate blood. Volunteer blood donors who help stock the shelves at hospitals are vital to people like Lyric who battle sickle cell disease in their everyday life, and the need for blood is constant for sickle cell and beyond. She says she is grateful to the many donors whose blood she has received over the years.

She also wants to raise awareness about sickle cell and wants to help kids who have it not to see it as an obstacle too big to overcome. 

“I just want children with sickle cell to know that they can have a life outside of being sick,” she said.  

Lyric has now put her job search plans on hold to see if she can get a stem cell transplant at the University of Chicago, a procedure that could change her life.  

Lyric Porter overcame many health challenges with sickle cell and navigated a new health system outside of her home state to attend college and earn her degree. She is now a proud graduate of Florida A&M University.

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.