This is the season for giving thanks.
For Juan Caballero, he’s thankful for the new breakthrough in medication for Sickle Cell patients. On July 7, 2017, the FDA approved the first new drug in 20 years for treating sickle cell disease, a rare red blood cell disorder that can lead to sudden, painful attacks.
Caballero, 67, a support group facilitator for the Advancing Sickle Cell Advocacy Project, (A.S.A.P.), gives hope to those who suffer from the disease. He and several others are defying the odds by living beyond the average life expectancy, which is approximately 60 years.
Sickle cell disease is a genetic condition that manifests itself only in individuals who inherit the defective genes from both parents, according to the National Organization of Rare Diseases.
Millions of people worldwide are affected by SCD. It is common among those whose ancestors came from sub-Saharan Africa; Spanish-speaking regions in the Western Hemisphere (Latin America and the Caribbean); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy.
It is estimated that SCD affects approximately 100,000. The condition occurs in 1 out of every 365 black or African-American births, and about 1 out of every 16,300 Hispanic-American births. About 1 in 13 black or African-American babies is born with the sickle cell trait (SCT).
A.S.A.P. was organized in 2015. Its mission is to educate and advocate on behalf of SCD patients and their families in Miami-Dade, Broward and Palm Beach counties.
Kemba Gosier is president of the nonprofit. She describes herself as the mom of a Sickle Cell warrior: “My daughter has a severe form of SCD. I lost my little brother Kevin Francis and several other people close to me from Sickle Cell. All were under the age of 30.”
She added: “The public doesn’t realize how serious it is. You can literally be fine one minute and in full distress the next. Many times people look fine and healthy on the outside while on the inside they are suffering from a painful, debilitating disease.”
Team A.S.A.P. members attend national conventions to learn about the latest research. They also conduct educational workshops at schools, churches, and health fairs, present monthly support group sessions, organize an annual picnic for children and sponsor an annual forum.
The team’s goal is to continue advocating for increased awareness, care, and treatment for Sickle Cell Disease patients.
Dorothy Jenkins Fields, PhD, is a historian and founder of the Black Archives, History and Research Foundation of South Florida Inc. Send feedback to firstname.lastname@example.org.