It was all tears at the annual meeting for the patients of sickle cell disease at Bat Valley play ground in Kampala, when the sick children recited poems and sung about how they are being stigmatized in society. Many of these children were around fourteen years, about the age they are told they will not exceed. They said they couldn’t play with fellow pupils because they were moving corpses. Even at home their parents deny them their rights assuming that they will not live long. One boy told me that the friends tell him he will not have a family. A girl in senior two said her friends tease her that she will never have a boy friend because she will not develop breasts because of being a 'sickler.'
 Children with sickle cell disease entertaining guests Patients with sickle cell disease in Uganda are being killed by dehydration, anaemia (lack of blood), and malaria. This implies that there are hundred percent chances of one surviving if the above three are handled. But on a sad note, there is not enough being done. Uganda is a hot country where these kids are not able to afford the five litres of fluids each day, lack of mosquito nets exposes them to constant malaria attacks because many families stay in poor environments. There is no enough blood at Mulago referral hospital to give to those in serious need. Worst still, there is only one clinic for the entire country that tests sickle cell disease.
Stress.
According to Uganda Sickle Cell Association, stress is the number one killer of patients with sickle cell disease. These children are being scared of death by parents, teachers, and friends. As they approach the age they are told they will die, they become so worried. In addition, this is the time most them are supposed to be in secondary schools where they need to study hard. Ruth Nankanja Mukiibi, the chairperson of the Uganda Sickle Cell Association, says many girls have died trying to procure abortion due to excessive lose of blood, because they are told that they will not be able to give birth.
Way forward
 Captain Lukia Mulumba serving cake to sickle cell patients A mother to a child with sickle cell disease, Captain Mulumba expressed the wide difference between sicklers in the United States and Uganda. While a child in America is diagnosed at birth, a child in Uganda would be identified to have sickle cell disease at the age of fifteen! Severe pain in Uganda is calmed with panadol while in the use they use oral morphine, which kills pain in a second.
To help the sickle cell association reach out to the public, Lukia and her husband together with well-wishers in U.S donated a van. ” For how long will government come to its sense and realize that the number of children dying is alarming before it can take action?” laments Lukia. …That is why I no longer beg government.” She said.
It is here that she objects to the people with sickle cell disease being referred to as sicklers.
“These are people who need special care. They don’t live in pain crisis forever because the pain can be controlled. They need to study like any normal child and are always doing better in class. My daughter Mariam is always number one in class.”
 The oldest sickle cell patient Bezaleli Wamala now 77 years with Ruth Nankanja also a sickle cell patient and the chairperson Uganda sickle cell association What is sickle cell disease?
In a remote definition, this is a blood disability, just like any organ of the body can be lame. The blood of a person with sickle cell is abnormal and the red blood cells expire faster than for a normal person, hence the need for enough blood in the body.
This is a disease that a child inherits from both of her parents who have the trait. Couples are advised to test before marriage just incase they are both carriers lest they give birth to sick children can prevent it.
It is a big challenge to other Ugandans living in the Diaspora. If all can join efforts there will be hope to save the lives of these children. |
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