Africans who have the blood disorder sickle cell anemia met this week in the northern Cameroon town of Garoua to step up an awareness campaign.
One hundred people with sickle cell from Cameroon and five other African countries sit and talk at the Garoua market square in northern Cameroon.
They say their aim is to educate people about sickle cell, an inherited, generally incurable disease that causes tiredness, swelling of the hands and feet, vision problems, and episodes of severe pain.
The patients want to end superstitions about the disease and stop doctors from pushing harmful practices like bloodletting and concoctions that will supposedly fix their blood.
Among the patents here is 26-year old Hayatou Alimatu who lost two children to the disease.
She came out today with her only surviving child, an eight year old girl who also has sickle cell.
Painkillers are expensive, and she hopes to one day take the child to a developed country in the hopes of getting more advanced treatment that could improve her quality of life.
She said her daughter normally gets outstanding grades at school and her averages grades are at the top. When she has severe episodes, known as crises, her grades drop.
Sickle cell anemia affects red blood cells, the cells that carry oxygen throughout the body.
Cells that are normally round become hard and look like the C-shaped farm tool called a sickle. They get stuck in blood vessels, causing pain. The cells also die early, causing a constant shortage of red blood cells.
Twenty-four-year old Blaise Fora said his hopes of getting married were shattered because he is a sickle cell patient.
He said he has decided to remain single because when he fell in love once and was preparing to get married, his fiancee’s family was vehemently opposed. They did not want him to – in their words – contaminate their daughter with sickle cell.
Fora said the family was concerned that the couple’s children might be born with the disease. Those types of concerns are shared by many people, and aid agencies are responding by suggesting couples that are about to marry to get genetic tests done first.
Haminatu Hadza Karim from Chad, is among those leading the largely informal campaign, organized by associations of sickle cell patients.
She says many of the women she works with have been thrown out by their husbands for delivering babies with sickle cell. She says she invites other women dealing with these prejudices to join them so they can fight for their rights and eradicate the disease.
Some people have the sickle cell trait without having the disease. To pass on the disease to a baby, both parents must be carriers.
Dr. Oumar Zacki, who takes care of sickle cell patients in Garoua, says a lack of genetic counseling means many people are without crucial knowledge.
He says the population of Central and West Africa move about with no visible symptoms but who carry sickle cell genes, passed from generation to generation in a pattern of inheritance.
The World Health Organization reports that in Cameroon, Gabon, Congo, Ghana and Nigeria, between 20 and 30 percent of the population carries the sickle cell trait. In Uganda, more than 40 percent carry the trait.