SICKLE CELL DISEASE. THE STIGMA AND MISCONCEPTION

Kyrian and Ada were lovers, they were like best friends, they decided to spend their lives together until they both found out that they carried the sickle cell traits and it was possible to have a child or two, maybe three that would have the sickle cell disease, so they end their love affair of a few years.

While the decision sounded wise, there are other ways to deal with the stigma that comes with either having the trait or having the disease.

Sickle cell anemia is a blood disease. It is usually inherited from carrier parent(s). It is a rare disease that occurs in people of African or African American descent. It can also be found in some Middle Eastern countries and also Asian countries like China. It occurs when a red blood cell is sickle shaped as result blood flow is restricted and it causes damage to vital organs. The normal red blood cell is biconcave in shape and the surface area allow for blood flow across it.

 The first misconception I need to correct is sickle cell trait and sickle cell disease; these are two related but different words. A person with the sickle cell trait is known as (AS) genotype, here the person just has the trait and it takes mating with a person who has another (AS) trait to have a twenty five percent chance to have the sickle cell disease (SS).  A person who does not carry the trait is referred to as (AA).I have heard a lot of people refer to the trait as equal to having the disease it is not true.

The stigma that lies with the misconception is one of the reasons why education for this disease is not rapid, a lot of people bask in the highest level of ignorance even when there are enough information outlets about this disease. About thirty years ago, the stigma of this disease was almost on the same level as having HIV. It was said to have no cure but another thing is that it was not a sexually transmitted disease, neither did a carrier’s condition get worse just by having the disease. Two lovers would stop dating or try to get married as soon as the information about carrying a trait was disclosed as though all their children would come out carrying the disease. A lot of African parents would discontinue a relationship when the information was disclosed because they didn’t want cases of burying children. The truth is out of every four children, one would carry the trait, it is a twenty five percent chance, so what if all the children came out normal or just the trait?

It is sad that a this rare disease has killed a lot of relationships, if two people are brave enough to continue their relationship against all odds and decide to get married, the fate of their children inheriting this disease is in their hands. 

There are two ways of early testing of the fetus to know what to expect, the first is using a method called Amniocentesis is a procedure in which the amniotic fluid of a pregnant woman is tested in her third- fourth month of pregnancy for this genetic disorder, a needle is used to withdraw the fluid which is then analyzed for the trait, the other method is using the Chronic Villi sampling which is done in the second month of pregnancy, the mother’s vagina has samples taken out with a needle, the  genetic information from the mother is also the same as that of the baby and the information is taken to the lab to be analyzed, if the outcome of the analysis proves that the baby will have the disease then they can make the best medical decision as the deem fit with the help of a doctor.

Proper education and public awareness will reduce the ignorance and common misconceptions of this disease and step up finding possibly permanent cures to this disease.