For millions of families around the world, sickle cell is not an obscure condition tucked away in a medical textbook, but a part of everyday life that affects children, teenagers and adults daily.

According to Tola Dehinde in her column Living with Sickle Cell, the word “rare” has followed sickle cell disease for too long, yet when you look at the number of people affected particularly across Africa, it raises the question of rare to whom.

She noted that Nigeria carries an enormous burden of sickle cell disease, yet the condition does not always receive attention proportionate to the number of lives it touches, which is one of the contradictions that has troubled her years of writing about the disease.

Dehinde explained that diseases do not exist outside society, as who is affected, where they live, their economic circumstances and the political priority given to their health can influence how urgently a condition is treated, making sickle cell also a question of health inequality.

She added that she has lived with sickle cell disease all her life, and that sometimes rarity is not only about numbers, but about being rarely discussed, rarely researched, rarely funded adequately and rarely placed near the top of the agenda, stressing that people living with the disease should not still have to fight simply to make the world understand that their disease matters.