by Pius Sawa Murefu, Kampala, UgandaSickle cell disease is a serious public health problem in Uganda and completely ignored by the government here.
Twenty percent of Uganda’s population has sickle cell traits and 25,000 children are born each year with sickle cell.
There are approximately 2000 charities working on HIV/AIDS in Uganda. Not a single one on sickle cell disease. The country has only one daycare sickle cell clinic: nothing but a small room made of plywood - no windows or facilities. There are 5000 registered patients at the clinic with only one dedicated doctor; and, he has to work from morning to evening, treating 200 patients a week. Many Ugandan doctors work at HIV/AIDS clinics because of higher pay.
The problem gets even worse in the rural areas. People are dying due to lack of treatment. They cannot afford to travel to the clinic in Kampala.
The Sickle Cell Association, run by two female “sicklers”, has been visiting districts offering counseling services. The turnout is always overwhelming.
Ruth Mukiibi, the chairperson of the association, says people in severe pain: children with swollen spleen, for example, and an anemic requiring a chronic transfusion, but they can’t help them. One parent says that he knows nothing about sickle cell apart from dying children. Others think it is a form of witchcraft.
Ruth says, “It took us two years to see the Ministry of Health about this problem. The Health Minister says was that there are more serious issues such as TB, Malaria and AIDS to tackle”.
Professor Graham Sergeant, from Sickle Cell Trust, in Jamaica, has been funding the Sickle Cell Association for the last five years. He wonders when the government will recognize that people are dying of the disease every day.
He says government needs to be aware of the frequency of this disease, and get involved in public education, and funding should be provided for research and disease management.
The Sickle Cell Association is appealing to the government to incorporate sickle cell awareness into the school curriculum. In addition, the Association has been soliciting for $130 000, to set up the first phase of a sickle cell center. The Association has also threatened to organize a demonstration at the parliamentary buildings if government continues to ignore the disease. Patients are ready to travel and join them.
What is Sickle Cell disease? Sickle cell disease describes a group of inherited blood disorders characterized by chronic anaemia, painful events, and various complications due to associated tissue and organ damage.
Because sickle cell diseases are characterized by the rapid loss of red blood cells as they enter the circulation, they are classified as haemolytic disorders, "haemolytic" referring to the destruction of the cell membrane of red blood cells resulting in the release of haemoglobin. [Source: Health A-Z website]
Some history: Sickle cell disease has been known to the peoples of Africa for hundreds of years. In West Africa various ethnic groups gave the condition different names:
Ga tribe: chwechweechwe
Faute tribe: nwiiwii
Ewe tribe: nuidudui
Twi tribe: ahotutuo
In the western literature, the first description of sickle cell disease was by a Chicago physician, James B. Herrick, who noted in 1910 that a patient of his from the West Indies had an anemia characterized by unusual red cells that were "sickle shaped.".
Some good news: Many children with sickle cell disease could be cured with stem cell transplants, according to new medical research from France. Doctors say they that 85% of children given the treatment are alive and disease-free after three years. [Source: BBC news]
