OBJECTIVE: TO IMPROVE THE QUALITY OF LIVES OF PEOPLE LIVING WITH SICKLE CELL

In Uganda 25, 000 babies are born annually with sickle cell disease. Sadly 70-90 % die before their 5th birthday. And those who survive go ahead to suffer from the overwhelming effects notably stroke (6%), physical disability (2%) and blindness etc and some of them have little knowledge about the disease. They think their children are bewitched and they are hidden in their houses so that they are not exposed to society resulting into lots of deaths. Most of the children die before the age of 5 years because their parents have no knowledge that their kids have sickle cell. Many people have misconceptions on management and treatment of sickle cell disease.

As an organization, we organize a conference every year, carryout community and school outreaches every month and hospital visits. We manage to educate students, parents, caregivers and people living with sickle cell about how the disease is acquired, the different management skills that can help them live healthier and proper medication that is the drugs they are supposed to take, when and how. We carry out sensitization and awareness on sickle cell disease so that people get correct information hence demystifying the myths surrounding the disease. It’s through these gatherings that we manage to collect some data which helps us to identify the community’s knowledge level, attitude, perceptions among others.

We provide medication to those with the disease especially those who cannot afford. We provide them with folic acid ,pain killers, multivitamins for three months and they always come for more when there is need.  There is always room for follow up since we take their information like location, names, phone numbers, hence improving the quality of life of people living with sickle cells. More sickle cell clinics have been set up in various hospitals by government to offer free treat.