Why Support YHSCF | YourHeartscf

WHY SUPPORT YHSCF

Your Heart Sickle Cell Foundation, Inc.

YHSCF

Supporting Your Heart, Inc. dba Your Heart Sickle Cell Foundation, Inc. (YHSCF) helps sickle cell disease research, awareness, and care, which is crucial because it directly improves the lives of millions of people affected by this painful and life-threatening condition.

Sickle cell disease primarily impacts Black and African-American communities, along with other ethnic groups, and has historically received less funding and attention compared to other genetic disorders.

By advocating for better treatment options, increased research funding, and accessible healthcare, we can help reduce suffering, extend life expectancy, and promote equity in medical care.

Every effort counts—whether through donations, spreading awareness, or advocating for policy changes, every effort contributes to meaningful improvements for those living with sickle cell disease.

Here are a few key reasons why support is essential:

Health Equity: Sickle cell disease receives less funding and attention than other genetic disorders.
Advancing Treatment Options: Advancing research can lead to better treatments and medications, new gene therapies, and potential cures, like the recently approved gene therapies that offer life-changing options for patients but it is very expensive.
Improving Patient Outcomes: Individuals with sickle cell disease experience severe chronic pain crises, frequent hospitalizations and organ damage, and shortened life expectancy—better healthcare and funding can significantly improve their well-being and receive the best possible care.
Reduces Stigma: Many individuals with sickle cell disease face misunderstanding and discrimination in medical settings, workplaces, and society. Advocacy helps educate the public and ensure patients receive the respect and care they deserve.
Access to Care & Support Programs: Many patients struggle with healthcare barriers, insurance challenges, high medication costs, and limited treatment available and limited options—supporting and funding sickle cell initiatives ensures better care and policy changes can improve access to lifesaving care to include providing resources for those in need.

Here are some key statistics about sickle cell disease:

Prevalence in the U.S.: Sickle cell disease (SCD) affects about 100,000 people in the United States.
Demographics: More than 90% of individuals with SCD in the U.S. are non-Hispanic Black, Black or African American, and an estimated 3%–9% are Hispanic or Latino.
Birth Rates: SCD occurs in about 1 out of every 365 Black or African American births and 1 out of every 16,300 Hispanic American births.
Life Expectancy: The estimated life expectancy of individuals with SCD in the U.S. is more than 20 years shorter than the average expected.
Healthcare Access: Many people with SCD do not receive the recommended healthcare screenings and treatments, leading to complications and reduced quality of life.
If you're interested in more details, you can check out the CDC's data on sickle cell disease.

Here are some additional important facts about sickle cell disease:

Global Impact: Sickle cell disease affects over 8 million people worldwide.
Types of SCD: There are multiple types of sickle cell disease, including HbSS (sickle cell anemia), HbSC, and HbS beta thalassemia, with varying severity.
Connection to Malaria: Sickle cell trait provides some protection against malaria, which is why it is more common in regions where malaria is prevalent.
New Treatments: The FDA recently approved two new gene therapies that offer transformative treatment options for sickle cell disease.
Complications: SCD can lead to stroke, lung problems, eye issues, infections, and kidney disease, among other serious health concerns.
If you’d like to explore more details, you can check out the CDC’s overview or NHLBI’s research.

Sickle cell disease primarily affects Black and African American communities, and Dayton, Ohio, has a significant population impacted by the condition. The Ohio Sickle Cell Services Program provides screening, education, and support for individuals with sickle cell disease across the state, including Dayton. According to the Ohio Department of Health, sickle cell disease programs have been in place since 1972 to support affected individuals.

For more detailed demographic data specific to Dayton, you can explore the Ohio Department of Health’s Sickle Cell Annual Report or the Dayton Children’s Hospital sickle cell program.

The CDC’s Sickle Cell Data Collection (SCDC) program tracks demographics and healthcare utilization for sickle cell patients across different states, including Ohio, Missouri, Maryland and Texas.

If you’d like to explore more details, you can check out the Ohio Department of Health’s Sickle Cell Annual Report, you can explore the Sickle Cell Association, of St. Louis, Missouri the Community Sickle Cell Initiative, of St. Louis, Missouri, the Maryland State Archives report, the Dallas Sickle Cell Organization, the Texas Sickle Cell Task Force Annual Report, or the CDC’s demographic data.