The world's most common genetic disease.
20 million people live with it. 80 % of them are in Sub-Saharan Africa, where half of all affected children die before the age of five — for lack of access to a treatment that costs 40 € per year.
What is sickle cell disease?
Sickle cell disease is a genetic blood disorder that affects red blood cells — the cells responsible for carrying oxygen through the body. In affected individuals, red blood cells take on a sickle shape, making them rigid and unable to flow through blood vessels, which they eventually block.
The blockage causes anemia and starves tissues of oxygen. It triggers intense pain crises — which children describe as shards of glass in their veins — that can last for days and require hospitalization with morphine. Patients are vulnerable to frequent, sometimes fatal infections, because the disease weakens the immune system. Other complications include strokes, pulmonary embolisms, growth delays, bone necrosis and blindness.
It is an autosomal recessive disease: when both parents carry the gene, one in four children is affected. The sickle cell trait emerged 7,300 years ago in Sub-Saharan Africa and persisted there because it confers resistance to malaria. An estimated 20–30 % of the population in the region carries the trait.
A neglected health emergency
Around 1 % of newborns in Sub-Saharan Africa are affected — about 400,000 births per year. Most of these children have no access to financial support for care, which is why nearly 60 % of them will die before adolescence.
In Senegal and Burkina Faso, sickle cell disease is among the leading causes of child mortality. It demands urgent attention and broader access to specialist care — which today remains scarce and expensive.
Despite a mortality comparable to HIV/AIDS, sickle cell disease receives a tiny fraction of the international funding directed at major pandemics.
The life-saving treatment: hydroxyurea
Hydroxyurea raises life expectancy from 5 to 50 years.
This drug cuts the frequency of pain crises by about two-thirds and reduces child mortality by around 70 %, while limiting hospitalizations. With long-term hydroxyurea treatment, children with sickle cell disease can live with few or no painful crises — attend school, build a career, raise a family.
Its cost is remarkably low: 40 € per child per year. This is precisely the treatment we fund, through our partner hospitals in Senegal and Burkina Faso.