Sickle Cell Disease is a genetic blood disorder that causes red blood cells to change shape and can lead to tissue damage and pain, as well as enlarged spleen, anemia, and other symptoms. It is most common among those of African descent. Not long ago, the life expectancy for children diagnosed with the disease was only 15 years. However, significant progress has been made over the years, primarily in the areas of pain management, resulting in fewer hospitalizations, and an increase in longevity using aggressive treatments such as bone-marrow transplants.
According to the Center for Disease Control and Prevention (CDC), the exact number of people living with Sickle Cell Disease (SCD) in the U.S. is unknown. Working with partners, the CDC supports projects to learn about the number of people living with SCD to better understand how the disease impacts their health. It is estimated that SCD affects approximately 100,000 Americans. SCD occurs among about 1 out of every 365 Black or African-American births. SCD occurs among about 1 out of every 16,300 Hispanic-American births. About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT).
Palm Beach County is one of the top three counties in Florida with the highest prevalence of Sickle Cell Disease (SCD) patients. Marked disparities in the number of SCD referral centers in comparison to SCD birth hospitals in the county have been reported. The Foundation is aggressively advocating on behalf of Sickle Cell patients and their caregivers to ensure that they receive the best possible care within the health care and school systems; are treated fairly; and that adequate programs and services geared to their specific needs are provided.
According to the University of Miami, Miller School of Medicine, “One in 13 children die before their fifth birthday. It is a tragedy and arguably a moral outrage when children die needlessly. Sadly, children with Sickle Cell Anemia are dying needlessly in Haiti, which has a high prevalence of this inherited disease.” The two most effective medications (Penicillin and Hydroxyurea) used to treat Sickle Cell patients are unavailable in Haiti. In Haiti, until now, a sense of fatalism concerning Sickle Cell Anemia has become a self-fulfilling prophecy – children with sickle cell anemia rarely survive infancy. Ironically, they die of an infectious complication of their disease that could be easily prevented – pneumonia.
The Foundation is currently in major talks with a top sickle cell researcher from a major medical university and we hope to secure a partnership agreement for St. Louis du Sud and Port-au-Prince to be part of a Sickle Cell Initiative, headed by this university. This initiative will focus primarily on sickle cell pre-screening for children ages one to five years old and the administering of life-saving vaccines and drug maintenance to reduce the high rate of infant mortality associated with Sickle Cell Disease.
Recently through our Sickle Cell Disease awareness and advocacy work in Haiti, a 6-year old Sickle Cell patient was referred to JAYJ Foundation for medical assistance. With the help of Dr. Ofelia Alvarez, a renowned Sickle Cell Disease Specialist in the State of Florida, we were able to assist and provided the necessary medications in a timely manner. We are delighted to report that the patient is doing well and attended her first day of school at the beginning of September. Her parents are truly grateful.
In the coming weeks, we will provide an update on the progress of this effort and the costs that will be associated with this initiative. As always, your financial support will be vital to the success of this important and life-saving initiative. Please be sure to check back right here for more information. Thank you.
Sickle Cell patients are often subjected to unfair bias and discrimination due to their illness. Hospitals have labeled them as “drug addicts” since the primary treatment for their recurring and painful “crisis” is the administration of powerful narcotics such as morphine, toradol, etc. Schools regularly classify them as “disabled” due to their frequent hospitalizations and extensive absences that can prevent them from completing the required coursework needed to obtain their High School Diploma. These are all myths!
Kimberly Charles, the only daughter of our Founder, Valentine Joseph, also has the full-blown disease. Now, 25 years old, Kimberly continues to fight through and has vowed not let Sickle Cell win or get in her way. She recently earned her Master’s Degree overseas at one of the most prestigious Language Programs in the world. Kimberly teaches Spanish at a local High School. Let this serve as an example of those Sickle Cell patients who can and do thrive.
Today, as we kickoff World Sickle Cell Awareness Day, please take the time to learn more about this dreadful disease that is taking the lives of so many children around the globe, especially in Haiti.
I lost 3 brothers in Haiti to this disease and my only daughter also has it but is thriving.
1600 children are diagnosed each year with Sickle Cell in Haiti and most of them do not live past the age of 5 because the most effective treatment, #PENICILLIN is not available in Haiti. Let us all put a stop to this madness by joining and supporting JAYJ Foundation for Women & Children #HaitiSickleCell Initiative.
PLEASE SUPPORT THIS INITIATIVE BY MAKING A DONATION