Every year on June 19 since 2009, countries all over the world celebrate World Sickle Cell Day. The day was proposed by the United Nations in 2008 to recognize Sickle Cell as a public health problem and raise awareness on one of the world’s most prominent genetic diseases.
Before then, there was a sickle cell awareness month (September) established in the US alone. However, many health care professionals and sickle cell anemics advocated for a single day for worldwide awareness.
The 2022 campaign for World Sickle Cell Day is called Shine the Light on Sickle Cell .
In Africa – which has the highest sickle cell rate, with Nigeria being chief – there are several misconceptions surrounding the disease. These misconceptions have led to the stigmatization of sickle cell anemics and have even put them in danger.
For instance, in Nigeria, the term “abiku” which literally means “born to die” in Yoruba is ignorantly ascribed to sickle cell anemics. Abikus are believed to be evil spirits of children who die before puberty, often returning in different children’s bodies to torment their parents. The recurring “spirit appearance” can, however, be easily explained with science as the disease is hereditary, and so the genetic makeup of the parents can lead to them having more children with the sickle cell disease.
If this is your first time hearing about the disease or perhaps you need to learn more, here are 5 facts about Sickle Cell Disease (SCD):
1. It’s a blood disorder
The disease is so called because it causes the red blood cells to have a sickle shape, rather than the normal disc shape. Red blood cells have a chemical compound called hemoglobin to which oxygen latches to form oxyhemoglobin and be transported round the body. With a sickle cell shape, it’s harder for the red blood cells to carry oxygen round the body to the organs that need it.
2. It’s genetic
When both parents of a child are carriers of a sickle cell gene, there’s a 25% chance that the child will carry both genes and have SCD. Sickle Cell Anemics have the SS blood genotype, so parents who both have the AS blood genotype – called sickle cell carriers – can have a sickle cell anemic child, even though they don’t have the disease themselves.
The safest option for people with the AS genotype is to only have children with someone with the AA genotype. For sickle cell anemics, it is also safest to have children with someone with the AA genotype as there is no chance of the child having SCD in that case.
3. SCD mostly affects black people
SCD is mostly found in countries with black people, however, it is also present in India, the Middle East and a few other regions.
The sickle cell gene – when it is single as in a carrier – is a natural protective measure against malaria which is prevalent in Sub-Saharan Africa. This is why the disease mostly affects the Black race. The black population in the Americas especially are mostly descendants of slaves from Sub-Saharan Africa, hence SCD cases in such countries are also high.
4. Sickle cell anemics can survive to adulthood
Though the disease causes chronic pain and recurring illnesses for them, sickle cell anemics can live well into adulthood with adequate healthcare and awareness of crisis triggers. Family and friends of sickle cell anemics should also ensure they do their part to take care of and improve the quality of life for them as much as possible.
5. Sickle Cell Disease has a cure
The only cure for sickle cell disease is a bone marrow transplant with bone marrow stem cells from a matched donor who is a family member. Red blood cells are produced in the bone marrow, so bone marrow replacement will allow for the production of healthy red blood cells and essentially rid them of the disease. However, the process is extremely risky and expensive. Many sickle cell anemics will never have the chance to undergo the procedure.
World Sickle Cell Day is a good day for everyone to contribute to the awareness of the disease and do their part in improving the quality of life of sickle cell anemics. One of the best things you can do is to find out your blood genotype and be intentional about not having children with a sickle cell carrier (AS genotype) if you are one yourself.