Rising Above the Pain: The Journey and Resilience of Those Living with Sickle Cell Disease
In a world that often overlooks or doesn’t understand their struggles, those living with sickle cell disease (SCD) are a testament to resilience, strength, and perseverance. SCD is an inherited blood disorder that distorts red blood cells into a crescent or “sickle” shape, leading to debilitating symptoms for those who suffer from the disease.
SCD affects millions worldwide, primarily within the African American/Black communities. Yet, despite its prevalence, globally, SCD is considered a “rare” disease. It also remains stigmatized, neglected, and misunderstood—both by society and by our healthcare system.
A Silent Struggle with SCD symptoms
For many with SCD, life is a constant battle with pain, fatigue, and fear of sudden complications. The pain “crises” that characterize this disease strike without warning and often requiring hospitalization. During my interviews, I spoke with several people living with SCD – their stories are both heartbreaking and inspiring.
Teanika Hoffman has lived with SCD all her life. “When you’re dealing with a very excruciating disease, it really prevents you from living a normal life,” she explained. This pain has resulted in numerous setbacks, academically and professionally, as Teanika has encountered barriers to adequate healthcare. “My care was really terrible, and I almost lost my life,” she revealed, sharing that this isn’t an isolated experience. “Most adult hospitals are not prepared or don’t know how to take care of sickle cell patients.” Unfortunately, many others face similar stories once they leave pediatric care. “Patients have to drive anywhere from an hour to three hours to get care,” Teanika added, highlighting the lack of local, specialized treatment centers.
Teanika’s story matches the experience and resonates with Ivy Bryant, mother to Peyton Clemmons, who has sickle cell disease. Ivy reflected on the emotional and mental challenges navigating her daughter’s diagnosis. “Having someone you can trust, that knows your kiddo is super important when navigating this disease because it can manifest very differently across individuals,” she said. Peyton, who has the SS strain of sickle cell—the most challenging form of the disease—has fortunately had somewhat less severe disease experiences, but Ivy vividly recalled the early uncertainties. “As a first-time mom, you’re getting used to all the different cries… I had to, in the back of my head, figure out if she’s hungry, tired, cranky, teething, or in actual pain.”
Managing Peyton’s condition for Ivy also meant learning to identify physical signs of sickling episodes. Peyton endured “webbing,” where swelling occurs between her hands and feet—an indicator of active sickling. “We see a hematologist routinely every 2-3 months,” Ivy explained, adding that Peyton takes Hydroxurea daily. The medication has significantly improved Peyton’s condition. Still, the early caregiving challenges were daunting. “When she was little, [the doctors] had me check for an enlarged spleen…you just imagine being a new mom, trying to adjust, and you have this additional weight on your shoulders to make sure your baby is okay.”
A Critical Gap Between Pediatric and Adult SCD Care
Both Teanika and Ivy’s experiences underscore the unpredictable, complex medical impact of SCD, as well as its emotional toll on patients and their families. These personal stories highlight the need for systemic change, especially when patients transition from pediatric to adult care. “In adult care, people are turned away, under-supported for their pain, neglected, and left, wrongly, in an ER setting,” Ivy explained. Teanika’s own journey highlights the same transitional challenges—after pediatric care, patients are often faced with a healthcare system unprepared and lacking the knowledge to meet their needs in fighting this rare disease.
Systemic Barriers and the Fight for Access
To shed more light on these systemic challenges, I spoke with Dr. Kareem Washington, Ph.D., Chief Clinical Operations Officer at Athari BioSciences and an expert in gene therapy. Dr. Washington has spent over 25 years advancing gene therapy and gene editing research, with a focus on inherited blood disorders, like SCD.
Having earned his doctorate in Biochemical Genetics from Howard University, he received specialized training in Molecular and Clinical Hematology at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the National Heart, Lung, and Blood Institute (NHLBI). During his postdoctoral tenure, he played a key role in advancing lentiviral therapy, which is now undergoing clinical trials.
Dr. Washington highlighted many of the challenges in SCD. “Out of all the current gene therapies for inherited disorders, sickle cell is second or third that has been FDA-approved,” he noted. Despite these advancements, access to these therapies remains limited due to cost. “There are very few centers that will administer these gene therapies, so there’s an access barrier, as well as a cost barrier… will health insurance cover these and share some of these costs?”
Beyond access to advanced treatments, Dr. Washington said there is also a lack of medical professionals trained to properly care for SCD patients. “We don’t have enough trained medical professionals in the emergency room and hematology departments to adequately treat sickle cell medical issues, health issues, and social issues.” Limited understanding of the disease can lead to delayed care or improper treatment – an especially dangerous result for SCD patients. “Many patients spend hours in the hospital but only receive 10-15 minutes of proper treatment, said Dr. Washington”. And in some cases, he said, they get the wrong treatment altogether. As a result, SCD patients have less trust in the healthcare system as a whole.
Persistence and Passion for Change and Advocacy
Despite the barriers, the sickle cell community continues to fight for better, equitable care. Across the country, people with SCD and their advocates are working tirelessly to push the disease into the national spotlight – to inspire conversations and effective policy changes.
Teanika Hoffman emphasized the need for stronger advocacy and community action. “This disease is underfunded, ignored, and forgotten about,” she stated. “In the last two years, we have started to get momentum, but historically, SCD has been ignored.”
Teanika has channeled her passion for advocacy into building her nonprofit, The Sickle Cell Coalition of Maryland. “Our vision is to ensure every Maryland Warrior has access to the tools they need to thrive and have an amazing life.”
Similarly, Ivy Bryant has championed improving the quality of life for children with SCD. She led an initiative within her organization, The Cigna Group, to support 80 African American/Black children with SCD at a summer program called Safe Swimming With Sickle Cell, a collaboration between The Cigna Group, Children’s Healthcare of Atlanta and the YMCA of Metro Atlanta. “We partnered with the YMCA of Metro Atlanta to host swimming lessons that were clinically guided and structured for kids with sickle cell,” Ivy shared, emphasizing the need to create inclusive and safe spaces for children, like her daughter, Peyton.
Giving Hope by Giving Help in the Community
Yes, there is hope for those with sickle cell disease. Advances in gene therapy, new medications, and a deeper understanding of the disease are paving the way for better treatments. Researchers are optimistic about these developments but emphasize they must be complemented by systemic changes in how care is delivered. Dr. Washington, too, is hopeful about the future but stressed that “access is only one arm of the bigger problem.” He emphasized communities need to be more inclusive and open to those with SCD.
Perhaps the most powerful force in the fight against sickle cell disease is the community itself.
The people I spoke with emphasized the importance of connection, of finding strength in shared experiences, and mutual support. “I tell the story within my professional setting and what it’s like being a caretaker,” Ivy said. “When you can rely on the strength of other people…your mind can always be on your child.” Her support network of family and friends allowed her to be the advocate Peyton needed.
Dr. Washington echoed Ivy, “Get involved with these organizations, the parents, the friends, and the entire communities.”
“It is a disease for the strongest of the strong,” said Teanika. Those living with SCD are more than their diagnosis; they are fighters, or as they call themselves, “warriors.”
The story of sickle cell disease is about pain and struggle, but it is also one of resilience, courage, and hope. If we listen to the voices of the warriors and address the inequities they face, we can create a world where SCD no longer defines a person, but instead is transformed to a disease that can be conquered.
