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Dealing with sickle cell disease

June 19 marks world Sickle Cell Day. Sickle cell disease, also known as sickle cell anaemia is a hereditary disease in which the red blood cells are deformed and this deformity causes them to block blood vessels, cause the blood to be “thin” and are unable to carry as much oxygen as a normal red blood cell.
Sickle cell disease is passed on from parents that carry the sickle cell trait to their children. Sickle cell is more prominent in people of African and Asian descent.
Sickle cell disease is characterised by episodes of painful joints (with or without swelling), abdominal pains, strokes, etc. All these due to blockages in blood vessels when the sickled cells group together and do not allow blood to flow to the affected area.
While there is no cure for sickle cell, it is usually managed by treating complications of blood vessel blockages.
Foundation of People Living with Sickle Cell Anaemia (FPLSCA) founder Cynthia Changufu-Kalaluka, expressed concern with the services offered to Sickle Cell Disease sufferers.
“In general, there is a lack of services for people who have sickle cell here in Zambia.  Only cities like Lusaka, Ndola and Kitwe have hospitals with personnel who are adequately trained to handle these cases”.
According to Mrs Changufu-Kalaluka, the best option for people with sickle cell disease is to live in one of these major cities in order to access good health care.  She also mentioned that there are certain drugs that are needed to manage the condition that are not readily available in Zambia. This poses a big challenge for poor families.
Lastly, Mrs Changufu-Kalaluka, pointed out that blood transfusions, which play an important role in the management of sickle cell are not readily available.
“In fact, unless you are dying it is extremely difficult to get a transfusion. Yet in countries such as the United States, blood transfusions are given even monthly at times to help patients with their condition”.
Another woman living with sickle cell disease, Tazilinda Mulenga, feels that universal testing for sickle cell disease at birth for all Zambian children should be made part of the under-five regime of tests. “Testing all children at birth for sickle cell disease at birth will allow parents to educate themselves on the condition and know how to care for their children better and may also help in preventing avoidable crisis and unnecessary blood transfusions”.
Mrs Mulenga is herself a mother of three and understands the importance of educating both parents of people with sickle cell disease and people who carry the sickle cell trait on the health requirements of children, adolescents and adults with sickle cell disease.
“All my children carry the sickle cell trait and will need to test their spouses before having children in order to understand the potential to have a child or children with sickle cell disease.
In Zambia, the survival rate for children born with sickle cell disease have improved significantly over the past 30 years, but there is still room for improvement.
For more information on sickle cell disease and information on how you can help email