Rare and Chronic Diseases

African Americans are at higher risk…

for rare and chronic diseases such as; heart diseases, stroke, cancer, asthma, influenza and pneumonia, diabetes, and HIV/AIDS. Chronic Diseases– A disease that persists for a long time. A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear. Eighty-eight percent of Americans over 65 years of age have at least one chronic health condition, diseases such as arthritis, cardiovascular disease (heart attacks, high blood pressure) stroke, cancer such as breast and colon cancer, diabetes, epilepsy and seizures, obesity, and oral health problems.

The Centers for Disease Control and Prevention (CDC) states that African Americans have a higher chance of dying at early ages for all causes, as young African Americans are living with diseases that are typically more common at older ages for other races. For example:

High blood pressure is common in 12% vs. 10% of blacks vs. whites aged 18-34 years,respectively. It is common in 33% vs. 22% of those aged 35-49 years, respectively.

Diabetes is common in 10% of blacks aged 35-49 compared to 6% of whites.
Stroke is present in 0.7% of blacks aged 18-34 compared to 0.4% of whites the same age. Stroke is common in 2% of African Americans compared to 1% of whites aged 35-49 and 7% vs. 4%, respectively, in those aged 50-64.

Rare Diseases

Diseases which affect a small number of people compared to the general population and specific issues are raised in relation to their rarity. There are thousands of rare diseases. To date, six to seven thousand rare diseases have been discovered and new diseases are regularly described in medical literature.

African Americans with rare diseases are being left behind, facing potentially deadly barriers in diagnosis, reatment, and representation in research trials. Though individual rare diseases don’t receive much public attention, roughly 30 million Americans—one in ten—live with a rare disease. Patients with a rare disease must overcome extensive barriers to get an accurate diagnosis or receive quality care.

Certain conditions such as sickle cell anemia (SCA) and keloid formation are linked to genes that are redominantly found within African Americans. Although there are rare diseases such as systemic lupus rythematosus (SLE) and breast cancer, which tend to occur across populations, there are still significant disparities in risk of disease development, severity of symptoms, and mortality. The African American communities are likely to experience even greater barriers to screening, diagnosis, and treatment of rare diseases than for common conditions due to a variety of cultural, socioeconomic, and environmental factors.

Support Is Important

The Balm In Gilead seeks to mobilize the faith community and raise awareness of the issues affecting rare and chronic diseases among African Americans via the capacity development of African Americans congregations to become an integral partner in:

Educating African Americans about Rare and Chronic diseases.
Educating the African American community on behaviors that support risk reduction and healthy aging.
Increasing awareness about the need for early diagnosis.
How to effectively support patients and caregivers.
Provide training and information to healthcare & public health professionals, regarding specific issues affecting rare and chronic diseases among African Americans.
Develop culturally tailored, faith-based tools and resources to be utilized by the health ministries to raise awareness about diseases specifically affecting African Americans within their congregations and communities.

The Balm In Gilead proudly advocates our Southeast Diabetes Faith Initiative

The Southeast Diabetes Faith Initiative (SDFI) is a multi-state faith-based program created by The Balm In Gilead, Inc., to expand the National Diabetes Prevention Program (National DPP). SDFI brings together community-based organizations, faith-based organizations, insurers, health care professionals, and other stakeholders, delivering the CDC’s Prevent T2 curriculum to prevent or delay the onset of type 2 diabetes, specifically among communities of color. SDFI makes it easier for people at risk of developing type 2 diabetes to participate in the evidence-based lifestyle change program to reduce their risk of Type 2 diabetes.