SICKLE CELL MYTHS ABET STIGMA

In 2011 in my first semester of my final year at the university, I was seated in the lecture room holding a magazine with a photo of Mrs Ruth Nankanja Mukibi the founder and Executive Director of Sickle Cell Association of Uganda. By then she was 36 years old, my course mates asked me about the lady and I told them she was a sickler. Their uniform answer was that it she can’t be and I was just speaking ill about the lady. Their reasoning was that a person with sickle cell cannot live to celebrate their 9th birthday and if they live longer by God’s grace at least they do not make 12 years. I told them am also a sickler and am not dead. They were shocked. It was a difficult situation for me to confess because I did not know how I would be treated or what amount of stigmatization I was going receive.

I confessed being a sickler because I wanted to counter the myths and stereotype that comes with sickle cell disease, the people living with the disease and those who care for them. What I was waiting for was the harsh treatment I was going to receive from those people whom I had told that I have sickle cell. To my surprise their treatment was good. One of them who was just a colleague and a classmate from that time became my good friend and she always check on me to find out how am faring. Another classmate called a year after university and inquired about how to take care of her cousin who is also a sickler. What I had feared that my confession was going to haunt me has just turned out to be a blessing. I realized that these people were confined to the thinking that sicklers die early because they did not have anyone to counter and trash that myth.

Knowledge is power that is a universally accepted statement. A person who has been equipped with knowledge is better positioned to guide and also do the right thing. Myths, stereotypes, stigma and ignorance have all been erased by people who are well equipped with the right and useful knowledge

When I audit the last five years of my sickle cell advocacy, 8 out of 10 questions asked at every awareness session are about myths. It’s not surprising that sickle cell has remained one of the diseases that are poorly understood by the public. When it comes to our African society witchcraft and its association to the disease makes life of sicklers a menace.

I want to put the facts clear to counter the myths. Sickle cell awareness campaigns shall be smooth if the myths are countered and erased from the public domains.

Myth

Sickle cell is infectious and contagious.

Fact

This is one of the popular myths and has also greatly contributed to the stigma faced by people living with sickle cell disease Sickle cell is not contagious disease. It’s an inherited disease that passed from parents to the child. Just like skin colour which can not be changed when you sit, eat, play or sleep with someone with another colour also sickle cell can not be gotten by associating with someone with sickle cell disease.

Myth

Sickle cell patients die at 5, 9, 12, 16, 21, 25, 30

Fact

People living with sickle cell disease can live a normal life when taken care of well. Although their life expectancy may not be the same as other people but they can live longer. I remember Mzeei Bulasio Wamala a Ugandan who has been recorded as longest living sicklers who died in 2008 at the age of 78 years. It’s not true that people with sickle cell disease have an age ceiling which they can not live beyond. Most people are told that they will not live to celebrate their 5th birthdays, when they reach 5 they are told 9 after 9 its pushed to 12, 14, 16 19, 21, 30. Its only God who knows when a person will die even doctors don’t know. We should not believe the prophets of doom.

Myth

Sickle cell patients don’t bear children

Fact

This is a common “verse” for lack of better word being told to people with sickle cell. It’s common to find people with sickle cell confined in corners and have made to believe that they will never live to see the happiness of having their own babies. A person with sickle cell has the ability to conceive and bear children. There are a number of sicklers who have more than two children.

Every sickle cell awareness campaign should put a lot of effort on providing information that counters myths and sickle cell stereotypes.

Love Life!

Ssebandeke Ashiraf