“The individuals that have to live with the fatal disease known as Sickle Cell need your help. We will forever be indebted to you for giving us the opportunity that some take for granted….LIFE.”
A lifelong Cincinnatian with a beaming smile, Carla Howard might seem like any other person on the street—she works at a local non-profit organization, loves spending time with family and friends, enjoys traveling and reading. However, sickle cell disease has had a significant impact on her life, and she uses her experiences to mentor younger sickle cell patients as well as advocate for blood donations from the community.
Carla’s journey with sickle cell disease began at the age of two, when, as her mother puts it, she “cried a cry she had never heard before.” After visiting Cincinnati Children’s Hospital, Carla was diagnosed with sickle cell—a blood disorder that changes normal, round red blood cells into a rigid, crescent moon shape. These abnormal cells can block blood vessels, impede oxygen flow and cause extreme pain.
“In my younger years, Sickle Cell definitely affected what I classify as ‘being a kid,’” Carla recalls. “There were no therapeutic offerings like there are today. I learned very early that I had to be very responsible of my time and mental state. My activities were limited. I plunged into my school work diligently, because I never knew when Sickle Cell wanted to knock at my door. I remember spending a lot of time in the hospital over holiday breaks while my classmates were off enjoying themselves. That reality was tough.”
And sickle cell as adult brings its own unique challenges. As an adult, Carla says that sickle cell affects her mentally and logistically: “I have to do things very strategically – scheduling of fun, sourcing employers who truly understand work-life balance, always being ready to ‘explain’ sickle cell, and mostly overcoming the thoughts that can invade my mind daily.”
Understandably, sickle cell is a constant weight on the back of Carla’s mind, and the uncertainty of when the disease will flare up can impact her mood. “The thing I dislike most is when individuals stereotype my behavior…and instead of asking if everything is okay, they go straight to ‘She is mean.’ No, I’m not mean!” she says. “But my mind is in overdrive thinking about how the rest of my week may go, because I have a nagging pain in my back.”
“Walking in the shoes of a Sickle Cell patient,” she adds, “isn’t something I would wish on anyone.”
While the fear of sickle cell flaring up is constant, the actual symptoms are worse—and often debilitating. In April of 2017, Carla went into a full sickle cell crisis within a span of two hours. “The pain was the worst I had ever felt,” she recalls. “The crisis left me with a partially collapsed left lung, and my body was not healing in a way that it should. My blood levels were off and my breathing was short.”
It was decided that the best treatment would be an outpatient blood transfusion. For sickle cell patients, it is safest to receive blood that matches closely to their own genetic heritage, as the patient will build up antibodies due to the large number of transfusions throughout his or her lifetime. The goal is to find a match from the same genetic background, which can eliminate many of the negative reactions the patients will face if they receive blood from a non-matched donor.
On that day, though, it took longer than usual to find an appropriate match.
“I was being admitted to “wait” on blood. It caught me completely off guard,” Carla says. “I missed a dear friend’s wedding and potentially would miss our family’s vacation. Nerves were on overdrive, but I got settled in my room and waited. And waited some more.”
“There were a lot of tears and anxiety,” she says. “Was I going to receive blood? Is there really not a match for me?”
Finally, after a 96 hour start-to-finish process, Carla received her much-needed blood transfusion. “Transfusions are like that caffeinated drink that gets you going but last so much longer,” she says of receiving blood. “I go from feeling sluggish to having a pep in my step.”
For patients with sickle cell disease, who often rely on regular blood transfusions to live a normal life, it is crucial to have blood on the shelf. Not only that, but they need blood that is matched to their genetic profile. Carla hopes that more people in the Cincinnati community will consider helping patients like her by making the effort to donate blood.
“The process is truly safe, and so many individuals are depending on you,” she says. “The individuals that have to live with the fatal disease known as Sickle Cell need your help. We will forever be indebted to you for giving us the opportunity that some take for granted….life.”
And to those who gave the blood she received in April, she is immensely grateful.
“THANK YOU!” she says. “Thank you for not being afraid to give a piece of yourself. In doing so, you have allowed me the ability of pushing my journey a little further.”