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July 18, 2025

What Causes Sickle Cell Anemia and Sickle Cell Disease? Discovering the Genetic Roots and Why It Disproportionately Affects Black Communities

At BlackBarberShop.com, we believe health conversations should start where trust lives—within our communities. That’s why we’re unpacking what causes sickle cell anemia and sickle cell disease, not just from a medical standpoint, but through a culturally grounded lens that reflects our lived experience. Rooted in a genetic trait that once offered protection against malaria, sickle cell disease disproportionately affects Black communities today—but that’s only part of the story. This page explores the science and the legacy—why this disease persists, how it affects Black families generation after generation, and what too often gets missed in mainstream health narratives. Based on our conversations in barbershops, churches, and community health events, this guide brings together expert analysis and real-world perspectives to give you the answers you deserve, with the cultural nuance mainstream sources often overlook.

Top 5 Takeaways

1. Sickle cell is genetic.
One mutation in the HBB gene changes red blood cells, causing blockages, pain, and serious health risks.

2. Black communities are most impacted.
The gene mutation evolved as protection against malaria, —now it disproportionately affects people of African descent.

3. This is more than a medical issue.
Sickle cell is underfunded and neglected. That reflects deeper racial disparities in healthcare.

4. We’ve heard the real stories.
From barbershops to churches, our community shares struggles with late diagnoses, ER visits, and daily pain.

5. What needs to change:

  • More funding for research that reflects the real burden.
  • Culturally competent care that respects Black lived experiences.

Looking Deeper Into Sickle Cell Conditions

Sickle Cell Anemia, a hereditary ailment, unfolds complexities that demand a thorough understanding for effective medical intervention. Red blood cells, due to a mutation, become sickle-shaped, obstructing their journey through blood vessels. Painful crises, fatigue, increased vulnerability to infections are some of the consequential symptoms in need of adept management.

Efficient control of symptoms predominantly involves addressing pain, preventing complications, and managing the psychological implications of enduring a chronic ailment. Regular medical evaluations, immunization, and swift infection treatment form a crucial part of this process.

Unraveling the Genetic Origins

This disease results from genetic alterations in the DNA sequence responsible for coding the structure of hemoglobin. A protein within red blood cells, hemoglobin, fulfills the crucial role of oxygen transportation to every part of the body. In individuals with Sickle Cell Anemia, this protein's structure undergoes a transformation, which impacts the shape and efficacy of red blood cells.

This detrimental mutation manifests in the HBB gene, responsible for creating beta-globin, an essential part of hemoglobin. This particular genetic alteration substitutes the amino acid glutamic acid with valine at the sixth position in the beta-globin chain, resulting in Hemoglobin S, an abnormal type of hemoglobin.

Due to Hemoglobin S, red blood cells lose their usual rounded and pliable shape, becoming rigid and sickle-shaped. Misshapen cells of this nature obstruct blood vessels, triggering painful episodes and severe complications, potentially leading to fatality. Hence, a single genetic mutation in the HBB gene is the genetic origin of this debilitating disease, drastically altering hemoglobin's structure and function.

Role of Inheritance Patterns

This disease arises from mutations in the HBB gene, a genetic directive for producing beta-globin. Hemoglobin, oxygen's vehicle in red blood cells, requires this protein for function.

Inheritance mechanisms pass these mutations down through generations. Sickle Cell Anemia inheritance necessitates two copies of the mutated gene, one from each progenitor. When just one parent provides the defective gene, the offspring will bear the trait but is not likely to manifest the full disease. This inheritance pattern bears the name autosomal recessive.

Sickle Cell Anemia is not an acquired condition; it is only transmitted heritarily. Prevalence in specific populations, notably black communities, is linked largely to inheritance patterns. 

Sickle Cell Disorders in Black Communities

High rates of these disorders are tied to inherited genetic components, further worsened by societal conditions. Dissemination of sickle cell awareness through community education proves invaluable. Such enlightenment arms individuals with disorder knowledge, thus diminishing associated cultural stigma.

Genetic counseling stands as an indispensable tool in disorder management. This counseling brings clarity to genetic risks and can steer family planning decisions. Yet, reaching these services often presents difficulties due to unequal healthcare access in black communities. These disparities, deepened by socio-cultural barriers, frequently hamper the success of public health interventions.

Support networks function as significant components in managing sickle cell disorders. Such networks offer emotional support, information, and practical assistance to those affected, including their families. 

Addressing Disparities in Healthcare

In-depth examination of systemic issues can illuminate paths towards addressing healthcare disparities. Sickle cell disorders' prevalence in Black communities highlights the urgent need for such actions.

Critical healthcare access, vital for managing these conditions, often faces obstruction from socioeconomic barriers. These obstacles span from insurance scarcity to under-equipped medical facilities in predominantly Black neighborhoods. Observations reveal that care quality for Black patients often falls short compared to other demographic groups. This discrepancy, in part, arises from unconscious bias, which fosters a hostile environment in healthcare.

Cultural competence in healthcare, a significant factor, emerges in such situations. This term denotes healthcare providers' capacity to respect, understand, and cater to varied cultural backgrounds and beliefs. By promoting cultural competence, bias elimination becomes feasible, patient-provider communication improves, and health outcomes can see significant enhancement.

“For decades, I’ve listened to brothers in barbershops describe pain so intense it stops them in their track. That’s not just a medical failure; it’s a systemic one. Sickle cell isn’t just a genetic condition—it’s a cultural crisis shaped by underfunding, misunderstanding, and generational neglect.”

Supporting Facts and Statistics

These stats aren't just data—they reflect what we've seen in our own families, barbershops, churches, and clinics. Here's what the research shows—and what we've known through experience.

1. Sickle Cell Is Not Rare in Black Communities

  • 1 in 350 non-Hispanic Black babies are born with SCD.
  • Compared to 1 in 2,070 births across all groups.
  • “In our circles, everyone knows someone with it.”

👉 cdc.gov

2. SCD Takes Decades Off Lives

  • People with SCD live 20+ years less on average.
  • This isn't just about lifespan—it’s about lost milestones.
  • “I’ve buried loved ones in their 30s. We knew it wasn’t just the disease—it was the neglect.”

 👉 cdc.gov

3. ER Visits Are a Routine, Not a Crisis

  • Adults with SCD (18–59) average 3 emergency visits/year.
  • Pain crises drive most visits.
  • “We’re treated like drug seekers instead of patients in pain.”

👉 archive.cdc.gov

Why This Matters

  • These numbers confirm what Black communities live every day.
  • The science is real—but so is the silence.
  • Change starts by listening to those who’ve lived it.

Final Thoughts & Opinion

More Than a Mutation — A Call for Equity, Justice, and Community Power

We see sickle cell disease as more than a genetic disorder—it's a reflection of deeper health inequities that impact Black communities daily.

What We Know

  • The science is clear: A mutation in the HBB gene causes sickle cell disease.
  • The reality is harder: This condition remains underfunded, understudied, and often ignored in public health priorities.

What We Hear in Our Barbershops

From real conversations in trusted spaces, we've learned:

  • Parents struggle with emergency visits and long wait times.
  • Young adults miss school or work due to unmanageable pain.
  • Elders often go undiagnosed or misdiagnosed for decades.

What Needs to Change

We believe progress starts with:

  1. Equity-Driven Research – Funding that reflects the disease’s real burden.
  2. Culturally Competent Care – Providers who respect and understand our lived experiences.
  3. Community Health Hubs – Using trusted places like barbershops to educate and empower.

Our Bottom Line

Sickle cell shouldn’t be invisible just because of who it affects.

Until it gets the urgency, funding, and compassion it deserves, we’ll keep using our platform to:

  • Share the truth.
  • Amplify lived experiences.
  • Push for health justice—one conversation at a time.

Frequently Asked Questions

What causes sickle cell anemia, and how does it affect your red blood cells?

A genetic mutation in the hemoglobin gene causes your red blood cells to form a sickle shape, which reduces oxygen flow and causes pain and organ damage.

How do you inherit sickle cell disease?

You inherit sickle cell disease when both of your parents pass down the sickle cell gene, which makes it a hereditary condition.

What is the difference between sickle cell trait and sickle cell disease?

If you carry one sickle cell gene, you have the trait and usually stay healthy, but if you inherit two genes, you develop the disease and face lifelong complications.

Why does sickle cell disease affect Black communities more than others?

Sickle cell disease evolved as a defense against malaria, which made it more common in people of African descent, especially in areas where malaria once thrived.

What symptoms should you expect if you live with sickle cell disease?

You might experience chronic pain, fatigue, anemia, delayed growth, vision problems, and frequent infections.

How can sickle cell disease cause pain crises?

Sickled cells block blood flow in your vessels, which triggers intense episodes of pain known as sickle cell crises.

What medical treatments help manage sickle cell disease?

Doctors may prescribe hydroxyurea, pain medication, blood transfusions, or bone marrow transplants to reduce symptoms and complications.

How can early diagnosis improve your chances of living well with sickle cell disease?

Newborn screening helps doctors start treatment early, which protects organs, prevents infections, and improves long-term outcomes.

What lifestyle changes help people with sickle cell disease stay healthier?

You should stay hydrated, avoid extreme temperatures, manage stress, and see your doctor regularly to monitor for complications.

How does sickle cell disease impact mental health in Black communities?

You may face emotional stress, stigma, and depression, so you should seek support from counselors, peer groups, and culturally aware care providers.

What role do genetic counselors play in helping families with sickle cell disease?

Genetic counselors help you understand your risks, make informed family planning decisions, and connect with available resources.

How can BlackBarbershop.org raise awareness about sickle cell disease?

BlackBarbershop.org uses trusted community spaces to educate, screen, and empower Black men and families to take control of their sickle cell health.

If you're inspired to learn more about the Black Barbershop Outreach Program and explore partnership opportunities for medical professionals, social organizations, and barbershop participation, visit our homepage today.

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