Sickle cell disease, or SCD, is a rare, genetic, life-threatening blood disorder that affects every organ in the body. Normal blood cells are round and flexible, allowing them to travel through small vessels to deliver oxygen to all body parts. Red blood cells in people with sickle cell form a crescent, sickle shape that breaks apart easily, clumps together, and blocks blood flow. The restriction of blood flow can cause a range of severe health problems.
Recurrent pain crisis is the most common symptom. Some say the pain associated with SCD is similar to gunshot and stab wounds, and these can last from 9 to 11 days — in some cases, longer.
Chronic complications can occur across multiple organs and include the death of bone tissue, skin ulcers, stroke, lung damage, blindness, neurocognitive impairment, pulmonary hypertension, heart and kidney failure, and early mortality.
Sickle cell is an all-encompassing condition. The impact of SCD on quality of life is complex and affects families and caregivers in many ways. The lack of treatment options, discrimination, the stigma around the need for chronic pain management, disruption of social activities, and missed school or work make living with SCD very difficult.
SCD presents challenges at home, school, work, and social relationships. People with SCD often end up on formal disability programs, which, unfortunately, carries its stigma.
Access to care and the cost of care can challenge SCD patients.
All SCD patients experience challenges with access, quality, and affordability of care. The picture of baseline or usual care for patients with SCD is highly variable. Deep dysfunction in care is driven by poor coordination within provider systems and many other barriers to access.
The economic impact includes loss of work productivity and more frequent or severe pain crises, likely contributing to job loss or reducing work hours.
The stigma of SCD is a pressing health concern. Factors contributing to sigma in SCD include racism, pain and opioid use, disease severity, and sociodemographic characteristics. Patients with SCD presenting to an emergency room for care experience longer wait times than other groups of people with health conditions. SCD patients who present at the emergency room are often falsely accused of exaggerating their pain or seeking drugs.
But we are making strides. Sen. Cory Booker, Sen. Tim Scott and others worked diligently for SCD legislation, which reauthorized a sickle cell disease prevention and treatment program, and grants for research, surveillance, prevention, and treatment of heritable blood disorders. We appreciate the support and care from Rep. Al Williams.
Join us on Saturday, September 24, as we host our second annual “Ride for the Cure” at the Riceboro Youth Center. Registration starts at 8:30 a.m., and the ride begins at 10 a.m.
I want to thank the communities in Liberty County for participating in SCD events because you are helping make SCD a public health concern, but there is more to do. I encourage you to continue to work and support the SCD community, building on the momentum we have, and we will not stop until there is a cure for every person with SCD.
Deloris Mitchell, PhD Founder and Executive Director Tapestry Connections, Inc.