According to Krithika Varagur, for The Guardian, the greatest burden of Sickle Cell Disease is in sub-Saharan Africa, where access to medical care and public health strategies to decrease mortality and morbidity are not uniformly available. Over 300,000 babies are born with SCD annually; between 2000-2021, the total global births increased by 13.7 percent to 515,00 disorders worldwide. SCD is one of the world’s most prevalent autosomal recessive genetic disorders; the sickle cell trait is more than six times more common in Nigerians than the cystic fibrosis gene is among people of northern European descent, or the Tay-Sachs gene among Ashkenazi Jews.



In the 1950s, a number of scientists speculated that the sickle cell trait confers some resistance to malaria – now a widely accepted theory – which would account for the prevalence of the gene in sub-Saharan Africa, home to more than 90% of all malaria cases in the world.
Over millennia, as more AS than AA children survived acute malaria infections and reached reproductive age, they passed on their single S genes. But for those with two such genes, the potential complications include acute pain episodes, acute chest syndrome, strokes, priapism, jaundice, numb chin syndrome, an enlarged spleen, leg ulcers and blindness.

The heritability of sickle cell anaemia, the most common and severe form of SCD, is as follows: if both parents are carriers (AS/AS), their children have a 25% chance of having the disease. If one parent has the disease (SS) and the other has no sickle cell genes (AA), there’s a 100% chance their kids will be carriers (AS) and a 0% chance they will have the disease.



In a world filled with struggles and setbacks, Lea Kilenga is a beacon of hope for those living with sickle cell disease.
Ms. Leah Kilenga Masamo Bey is the founder and executive director of Africa Sickle Cell Organization. She works as a project manager and a patient advocate and partners with National & Local Government, CSO’s and other Healthcare Stakeholders to create programs, guidelines, policies and healthcare systems around Sickle Cell Disease (SCD) and Non-Communicable Diseases (NCDs) in Kenya.



Growing up with sickle cell

Lea Kilenga was born into a family where three out of four siblings, including herself, were diagnosed with sickle cell disease. The youngest sister succumbed to the disease at just 4 years old, while Lea was given a grim prognosis - she wouldn't live past her 8th birthday. Sickle cell disease is a debilitating blood disorder that distorts red blood cells, causing blockages in blood flow to organs, leading to severe complications such as stroke, anemia, and excruciating pain. Kilenga vividly recalls the pain and challenges associated with the disease, emphasizing the urgent need for improved medical care and support for those affected.

Creating a new phase
Determined to make a difference for sickle cell patients, Kilenga embarked on a mission to shed light on the struggles faced by those living with the disease. She captured stories through photography and interviews, revealing the harsh realities of inadequate healthcare and societal stigma faced by sickle cell patients in Kenya. Kilenga's efforts caught the attention of the Ministry of Health, leading to the establishment of national guidelines for sickle cell disease management. She then founded the Africa Sickle Cell Organization, focusing on providing access to treatment, education, and support for the growing population of sickle cell patients in sub-Saharan Africa.



Connecting patients with clinics
Through her organization, Kilenga facilitates patient enrollment in health insurance programs and connects them with specialized sickle cell clinics for comprehensive care. The organization collaborates with governmental and non-governmental entities to expand access to quality treatment for patients, offering vital services such as diagnostic testing, medication, and caregiver support. Kilenga's dedication has seen the establishment of four clinics in Kenya, serving thousands of patients and making significant strides in reducing the stigma surrounding sickle cell disease.



Opening hearts and minds
Beyond medical intervention, Kilenga is committed to raising awareness and eliminating the stigma associated with sickle cell disease. She engages with communities, educating them about the disease, dispelling myths, and fostering acceptance and support for sickle cell patients. Kilenga's grassroots efforts have sparked conversations and brought about positive change in societal perceptions towards sickle cell. Her message is clear - those with sickle cell deserve dignity, respect, and the opportunity to lead fulfilling lives.
Lea Kilenga's unwavering determination and compassionate spirit continue to impact the lives of sickle cell patients, offering hope and empowerment in the face of adversity. Her story is a testament to resilience, advocacy, and the power of one individual to bring about meaningful change in the world.



Source(s)
ApexLifeHub
The guardian
Echoing green
Researchgate.net