Sickle cell anemia: knowing the disease to live better with it

In rural Uganda, where sickle cell disease is still poorly understood, people affected by it can face lifelong challenges.

In the east of the country, in one of the areas most affected by the genetic disease, a young woman who suffers from the condition is redoubling her efforts to educate and advise communities about this blood disease.

"They never saw me as someone important, as someone who would grow up or someone who should get an education, because they told my mother that people like me don't grow up, that 'they can't go to school and they don't have children so my mother took care of me and stopped taking me to the hospital when I reached the age. When I was 12, she put me in a taxi from our village and told me to go to the clinic..." said Barbara Nabulo, a sickle cell patient. 

Sickle cell disease is an inherited disease that affects the hemoglobin in the red blood cells that carry oxygen in the blood. Red blood cells deform and harden and block blood circulation, which can cause anemia or vaso-occlusive crises and increase the risk of infections.

"Before he was two years old, my son got sick, but we didn't know what illness it was. So we confirmed his diagnosis when he was 2 years old in Atuturu, and it was from there that we started fighting with him until today." explainedUsula Ipaet, caregiver/aunt of a sickle cell patient. 

The only cure for the pain caused by sickle cell disease is a bone marrow transplant or gene therapy.

A treatment that is out of reach for most patients in Uganda where many poor families rarely go to hospital due to financial constraints.

Sickle cell disease is not a public health priority despite the burden it places on communities across the country.

"I would say hydroxyurea is a miracle drug, because it changed the course of caring for children with sickle cell disease. Before, we were so frustrated, you know. You take care of a child, and then he gets sick. He was 12 years old and he had so many complications that even you started wishing it would all stop and saying this child Because of this trauma, hydroxyurea was a game changer. It improves the quality of. life of these patients" indicated Julian Abeso, head of the pediatrics department at Mbale regional hospital:. 

Funding for treatment often comes from donor organizations.

According to the Ugandan Ministry of Health, approximately 20,000 babies are born with sickle cell disease in the country each year.

"At the time when Barbara was born, if someone had sickle cell anemia, people looked at her as a sick person, but I think until now people have a little light (of understanding) thanks to the disease. "radio news,..." said Michael Kiboya, father of Barbara Nabulo. 

Nabulo and health workers advocate open-mindedness and screening children for sickle cell disease as early as possible.

Doctors say recent efforts to promote understanding of sickle cell disease in the region have increased the number of people seeking professional help at the hospital.