Impact Scholars: Understanding Sickle Cell Disease and Its Impact

Published on Friday, July 25, 2025 in Blog

Introduction: Sydnie Williams

My name is Sydnie Williams, and I am a rising sophomore Psychology major on the Pre-Medicine track at Spelman College in Atlanta, Georgia. Originally from St. Louis, my passion for both medicine and my community has grown significantly throughout high school and now into college. My interest in healthcare began when my mother was diagnosed twice with cancer—first with Stage 4 breast cancer and later with leukemia. However, I realized I wasn’t drawn to hands-on clinical medicine, but instead to the mind, particularly how mental health impacts African Americans. 

Understanding the stigma surrounding mental healthcare in the Black community, and how that leads to reluctance in seeking help, I committed myself to studying this issue. I aspire to become a pediatric psychiatrist and eventually open a practice that serves marginalized populations who face systemic disadvantages and cultural stigma around mental health. 

This summer, I am interning at the St. Louis University School of Medicine through their Undergraduate Research Program. This initiative supports students underrepresented in medicine, providing research experience and exposure to the field. Under the mentorship of Dr. Daniela Hermelin at ImpactLife Lab—a center that focuses on treating and understanding blood disorders like Sickle Cell Disease (SCD)—I’ve been inspired by their commitment to community health through blood donation, research, and outreach. 

Together, Dr. Hermelin and I created this three-part blog series. This first installment focuses on Sickle Cell Disease as a blood disorder and explores the impact, challenges, and treatment options associated with it. 

Understanding Sickle Cell Disease and Its Impact 

During my summer internship with St. Louis University School of Medicine, I’ve had the privilege of working closely with Dr. Hermelin and members of ImpactLife Blood Center. This experience has deepened my understanding of the “vein-to-vein” continuum - how blood is collected, processed, and used for transfusions, especially in the care of patients with Sickle Cell Disease (SCD). 

Sickle Cell Disease as a Blood Disorder—and Who It Impacts 

SCD primarily affects African American individuals. One major theory behind its origin is that the sickle cell mutation evolved as protection against malaria in sub-Saharan Africa (Kevin Esoh, Ambroise Wonkam). People with one copy of the mutated gene (sickle cell trait) were more likely to survive malaria. However, inheriting the gene from both parents results in Sickle Cell Disease, a much more serious condition. 

Despite affecting over 100,000 Americans, SCD receives far less federal research funding than conditions like cystic fibrosis, which primarily affects white populations (Farooq et al.). Additionally, Black patients with SCD often face medical bias—experiencing delays in pain treatment and being labeled “drug-seeking” in emergency settings (Lee et al.). These systemic disparities have only deepened my commitment to addressing inequities through research and outreach. 

What Is Sickle Cell Disease? 

Sickle Cell Disease is an inherited blood disorder in which the body produces abnormal hemoglobin—called hemoglobin S (HbS). Hemoglobin is the protein in red blood cells that carries oxygen. In individuals with SCD, red cells become rigid, sticky and shaped liked a crescent or “sickle” after releasing oxygen, making them prone to clumping and blocking blood flow in small vessels, which causes pain and organ damage. 

SCD is most prevalent among people of African, Hispanic, or Mediterranean descent. About 1 in 365 Black infants is born with the disease in the U.S. SCD is autosomal recessive—meaning both parents must carry the gene for a child to be affected. Individuals with one gene have sickle cell trait, often with no symptoms, and may not even know they carry it due to lack of testing and awareness. 

Symptoms of SCD can include: 

• Chronic anemia 
• Pain crises 
• Swelling of hands and feet 
• Frequent infections 
• Vision problems 
• Organ damage 

Despite its severity, SCD is under-discussed in African American communities. Many people I asked only knew about it if they had a close relative with the disease or medical training. This highlights the need for broad public education. 

Is There Screening for SCD? 

Universal newborn screening for SCD was officially recommended by the NIH in 1987 and implemented nationwide in 2006. This means everyone 18 years old or younger in 2025 should have been screened at birth. However, adults older than 18 may not know whether they carry the trait unless tested later. 

Treatment & Therapies 

While there’s no universal cure for SCD, some advanced treatments show promise. These include: 

• Bone Marrow Transplant: This replaces the patient’s bone marrow with healthy marrow from a donor. It is currently the only potential cure but is not widely available due to cost and health risks. 
• Gene Therapy: A newer treatment that modifies or replaces faulty genes. This is still under development and remains expensive. 
• Blood Transfusions: The most common treatment. Transfusions increase the number of healthy red cells, improving oxygen delivery and reducing complications. In some cases, exchange transfusions remove sickled blood while transfusing healthy red cells. These are more intensive but can be highly effective. 

For SCD patients, the most compatible transfusions come from donors of similar ethnic backgrounds. Unfortunately, African Americans are underrepresented in the blood donor population, limiting the availability of best-matched blood. 

Why Aren’t More Black People Donating Blood? 

Historical injustices have contributed to this gap. During segregation, African Americans were turned away or had their blood separated from white donors (Guglielmo, The Conversation). These actions fostered long-standing distrust in medical systems. Today, despite progress, that legacy still affects Black participation in blood donation. 

The Mission and Work of ImpactLife 

ImpactLife is a blood donation and research center that supplies over 120 hospitals in the Midwest. For 50 years, they’ve championed blood education and innovation. From pioneering automated collection in the AIDS crisis to tripling their hospital partnerships in the 1990s, ImpactLife has grown through service, science, and community outreach. 

They don’t just collect blood—they educate the public, support cutting-edge cellular therapy, and offer young people opportunities to get involved. Their work extends to underserved populations, including those impacted by Sickle Cell Disease. 

Impact’s Impact: SCD Outreach and Drives 

ImpactLife has launched targeted blood drives to support SCD patients, including collaborations with: 

• 100 Black Men of Metropolitan St. Louis 
• Omega Psi Phi Fraternity’s Dr. Charles Drew Blood Drive (May 2025, St. Peters, MO) 
• KSHE 95 Summer Blood Drive (to address seasonal blood shortages) 

These efforts focus on high schools, churches, and community colleges—key sites for engaging diverse donors and building trust. 

Red4Life: Promoting Donor Diversity 

ImpactLife’s Red4Life Program invites donors who identify as African American, African, Latin or South American, or Pacific Islander to enroll. These donors are tested to determine compatibility for SCD patients, increasing the chances of safe, effective transfusions. 

To improve donor diversity, I believe outreach must include: 

• Culturally tailored, easy-to-read materials 
• Presence in community hubs: churches, schools, health fairs 
• Social media campaigns designed for younger, diverse audiences 

Conclusion: Community is the Cure 

Sickle Cell Disease is a serious and under-resourced health condition. Increasing awareness and diverse blood donations is essential to improving outcomes for those affected. I’m grateful to share this work through ImpactLife and hope this blog helps expand understanding of SCD and encourages more people to get involved. 

By making SCD a community mission, we can save more lives—and uplift the communities most in need. 

About the Author

I am Sydnie Williams, originally from St. Louis, MO, but attending college in Atlanta, Georgia, at Spelman College, the #1 HBCU in the nation. Majoring in Psychology on a Pre-Medicine track, and a member of the Minority Association of Pre-Medical Students (MAPS), I have aspirations of becoming a pediatric psychiatrist and opening my own practice. I understand the demand for mental healthcare specialists in children and adolescents, specifically those in Black and Hispanic communities, and hope to contribute.  

As a participant of St. Louis University School of Medicine Summer Research Internship, I have been given the opportunity to shadow and study with Dr. Hermelin who is the Chief Medical Officer at ImpactLife Blood Center and an Assistant Professor of Pathology at the SLU SOM. Together, we have worked to create this piece to reflect on the accomplishments of ImpactLife, as well as the ways we can spread more information to the communities affected by Sickle Cell Disease and blood disorders. My passion for medicine and helping my community has been able to shine through this project, and I look forward to deepening my knowledge of the field.