African victims of sickle cell anemia are seeking better awareness and help for their widespread but little known disease. VOA's Nico Colombant reports from an international seminar in Senegal's capital, Dakar.
Government health officials and experts have been milling around a convention center in Dakar this week, tackling the problem of sickle cell anemia, which is estimated to affect up to 40 percent of the population in some African countries, like Rwanda.
A victim of sickle cell anemia explains it is a blood disease, which is not contagious but passed on through the genes of your parents. He says it sometimes causes blood to circulate poorly and causes problems with articulations.
It also makes a person anemic, prone to infections and repeated bouts of general pain. There is no cure.
Souleymane Diop explains some of the ways he copes with his condition.
He says he closely consults with a doctor, and takes medication which has codeine or other pain-killers. He says you have to avoid keeping your legs and arms too straight or too crossed for long periods, and wear loose clothing and shoes as much as you can.
He says it is also important to have good hygiene, drink lots of water, and avoid places that are too cold, too hot or too smoky.
Magueye Ndiaye is president of an association of victims of sickle cell anemia. He says it is hard for him to keep a regular job because of his own condition.
But he has no shortage of ideas to help other victims.
"First, people should be tested before they get married," he says. "People should know what the risk is for their children as well. Every newborn should be tested. We do not do it here in Senegal, even though it would not be very expensive. We do a little bit of awareness here in Dakar, in the capital, but in the interior, where there are more victims, they also need help."
If both parents are sick, there is a 50 percent chance their child will be as well.
Ndiaye's association has 700 members, even though up to 10-percent of Senegal's population is estimated as being affected.
"Nothing has been done to reach out to all these people. We have no specialized center. Doctors do not know much about sickle cell anemia. People have to go up to 500 kilometers to find a doctor in Dakar. Since our independence in 1960, nothing really has been done to help our plight."
He says he hopes the seminar will not just be a series of unfulfilled promises as he says is the case with many similar seminars.