Providing Relief to Persons Living with Sickle Cell Disease and their Families by Empowering them out of the Challenges of Poverty, Access to treatment, Drugs, and Research towards a Solution to sickle cells.
Highlight: The Global Scope of Sickle Cell Anemia
Sickle Cell Disease (SCD) is a genetically inherited incapacitating illness caused by a point mutation in the beta-globin gene that requires early diagnosis after birth and constant monitoring throughout the life span of the patient. Sickle cell disease is the most common genetic disease on the planet. It affects the haemoglobin (which carries oxygen through the body) and takes the form of anemia, susceptibility to infections, very painful seizures caused by poor blood circulation and insufficient tissue oxygenation (particularly in the bones) and vaso-occlusive crises leading to major complications such as stroke, acute chest syndrome and osteonecrosis.
SCD is most prevalent in Sub-Saharan Africa, The Americas, Saudi Arabia, India and the Mediterranean countries such as Turkey, Greece, Italy and South East Asia. SCD is highly prevalent in malaria endemic regions of the world and the greatest burden lies in Africa where the number of newborns affected by SCD are estimated to be more than 200,000 annually. In Africa; SCD is associated with high rate of Childhood Mortality, 50-90% of African children with SCD die early in their childhood. Approximately 1000 babies are born with SCD in Africa every day and more than half of these die before they are five years old. The prevalence of SCD carriers across equatorial Africa is between 10% and 40% which results in an SCD prevalence of at least 2%. In parts of West and Central Africa, the prevalence of sickle cell trait is as high as 25%. In parts of West and Central India, 20% of children born with SCD die before the age of two. In North America; people with the sickle cell trait are 2-3 million, while the prevalence of the sickle cell trait in Brazil alone is 1-2 million on the other hand; in Latin America, over 6000 SCD births are recorded and between 100,000 to 150,000 adults are affected by SCD. In the UK; between 12,500 to 15,000 people are affected by SCD whereas 4.2% of the total Saudi Arabian population are a carriers of the sickle cell trait and 0.26% is affected by SCD. In the United States; about 100,000 Americans mostly of African decent are affected by SCD
Drawing from their own experiences while facing the everyday challenges with their daughter who is affected by SCD, and looking at the challenges that their peers who are equally affected by SCD; Enock and Diana were compelled into establishing The Global Initiative for Sickle Cell Anemia (GISA). SCD affected persons face various challenges as they encounter SCD on an every day schedule. The notable challenges that the founders identified include; the lack of information and awareness, the lack of access to medicine to reduce the impact of SCD, the lack of affordable SCD medical services, the lack of relief approaches towards emergency responses for SCD affected persons, the lack of research into alternative medicare, lack of a broad awareness campaign at a global scale to highlight the plight of persons affected by SCD and the lack of peer to peer learning and knowledge sharing platforms.
We want to provide information, comfort, care and financial relief in times when it is most required to give a breakthrough and save a life when that kind of help is mostly needed.
It is from this experience that we imagined what the experience would be like for persons with SCD and felt the need to mobilize a community of persons affected by SCD and welwishers to start up a relief support initiative that is unbound by boundaries to help give hope and a second chance to life.
We want to create a community of SCD affected persons such that we establish a rapid response system that watches out for persons in crisis of an attack, shortage of drugs, shortage of the necessary food supplies, shortage of transportation means to get to a health facility, we want to raise funds to establish regional response centers right from central Africa and Sub-Saharan Africa which has the highest prevalence of persons affected by SCD; that way we bring services closer to them.
It is our goal to purchase motorbikes and vehicles to establish a rapid response unit manned by volunteers, who reach out to persons who need emergency help, to reachout to them anywhere, everywhere at anytime. We want to partner with pharmaceuticals and encourage them to develop a philanthropic side to their business that will see us purchase essential SCD prescription drugs and distribute them to our SCD community in situations of emergency, poverty.
We do not want to see an SCD patient get stuck in a hospital as a result of exhorbitant hospital bills, we want to work with you to mobilise donations and get immediate solutions to persons affected by SCD. We want to participant in research and also story sharing powered by our website, where we encourage you to share your story in that hospital where you are so that our community can reach out to you as we post your story on our blog immediately after you share it with us through our 'your story' webpage.