Volunteer Spotlight: Sickle Cell Disease

 Sickle Cell Disease

Submitted by: Vanessa Furaha

Date of Submission

May 31, 2026

Abstract

This research paper examines the biological and systemic challenges of Sickle Cell Disease (SCD) to

support a public awareness campaign. SCD is a hereditary disorder where abnormal hemoglobin (Hbs)

causes red blood cells to become rigid and sickle-shaped, leading to chronic pain and organ damage.

This paper explains inhereitance patterns, noticing that if both parents have the sickle cell trait (HbAS),

there is a 25% chance of their child will inherit the disease. Despite its prevalence, SCD faces a lack of

funding and public awareness. By reviewing modern treatments like CRISPR-Cas9 and fetal

hemoglobin (HbF) induction, this study argues that education and advocacy are necessary to improve

healthcare equity and patient outcomes.

Introduction

Background of study

Sickle Cell Disease (SCD) is a significant global health burden characterized by a genetic mutation in

the hemoglobin protein. In individuals with SCD, the production of abnormal hemoglobin, known as

HbS, causes red blood cells to lose their flexibility and assume a crescent or “sickle” shape. These

distorted cells frequently obstruct blood flow, resulting in severe episodes of pain called vaso-occulsive crises, progressive organ damage, and is a shortened life expectancy. The condition is

inherited in an autosomal recessive manner; for instance, when two carrier of the sickle cell trait (HbAS)

conceive, there is a statistical probability of P = 0.25 that the offspring will manifest the disease (HbSS).

Despite the biological complexity and the millions of people affected worldwide, SCD has historically

been marginalized in terms of research funding, clinical resources, and general public discourse. This

neglect has led to systems for patients managing chronic symptoms. While emerging biotechnologies

like CRISP-Cas9 gene editing and pharamcological methods to increase fetal hemoglobin (HbF) levels

offer hope for a cure, these advancements remain inaccessible to many.

Goals and objectives

Goals

To fully understand the social and money-related

reasons to stop SCD patients from getting good

medical care.

To create a fairer healthcare system where SCD

research and doctor visits are treated as just as

imported as other genetic diseases.

To help the SCD community by making the

disease more visible to the public and pushing for

new laws that help patients.

To lower the impact of the disease worldwide by

making genetic testing and new medical

treatments easier to reach.

Objectives

To study how things like family income, where

someone lives, and health insurance affect the

quality of care and how often SCD patients end

up in the hospital.

To see how much the average person actually

knows about the sickle cell trait and the daily

struggles of living with the disease.

To look at how groups run by patients can change

governments laws and help get more money for

research.

To come up with ways to talk about SCD that stop

the shae around the disease and encourage

people to get tested early to see if they carry the

gene.

Thesis statement

Since Sickle Cell Disease is an inherited blood disorder that is often misunderstood by the public, a

targeted awareness campaign must focus on educating communities about genetic inheritance

patterns and the importance of trait testing to empower future generations and improve patients

outcomes.

This chart illustrates the Mendelian inheritance patterns for Sickle Cell Disease. When both parents

carry the sickle cell trait, there is a cumulative 75% chance that a child with either carry the trait or be

born with the chronic disease, highlighting the need for widespread genetic screening.

Facts and figures

Visualize and illustrate your research data using graphs.

100K Americans Living with

SCD 300K

Annual Global Births 1 in 13 Black Babies Born

with the Trait

Approximately 100,00 people

in the United states have Sickle

Cell Disease. Most are of

African descent, but it also

affedts Hispanic,

Mediterranean, and Middle

Eastern communities

Out of every 13 Black or African

American babies if born with

the Sickle Cell Trait (HbAS). Tis

high frequecy makes genetic

screening essential for family

planning.

Over 300,00 babies are born

with Sickle Cell Disease every

year worldwide. The majority of

these births occur in Sub- Saharan Africa, where

resources for treatment are

often limited.

Key findings

Systemic Funding Disparities Even though Sickle Cell affects way more people than

many other genetic diseases, it gets much less research

money. This makes it harder to find new, affordable

medicines.

The Pain Patients feel extreme pain when their cells get stuck, but

because you can’t “see” it like a broken bone, doctors

sometimes don’t take it seriously enough in the ER.

New Hope Scientists have found a way to “fix” the DNA using CRISPR,

but right now it cost millions of dollars. The big challenge is

making this cure available to everyone, not just the rich.

Conclusion

Sickle Cell Disease (SCD) is a major health challenge that has been overlooked for too long. It is more

than just a biological issue; it is a human crisis affecting millions, particularly within Black and Hispanic

communities. The core issue is that while we have the technology to treat SCD, we lack the equity to

fund it. It is unjust that a disease affecting to many receives less attention than rarer conditions. This

campaign aims to ensure “SCD” individuals no longer have to fight to be heard or struggle to afford

expensive cures.

Resources

National Library of Medicine

National Human Genome Research Institute

SCDAA