When I got asked to write this article I did not know what angle to take. Sickle cell has become such a multifaceted phenomenon that its hard to know what is fact, urban myth, and also what its real life implications are in terms of the bigger picture past adolescence. So I decided to begin with my personal experiences.
In Africa, Sickle Cell Anaemia affects a significant number of people; in most families it takes the lives of children before the age of 9. It is an illness which I have grown up a witness to. A few individuals close to me have been afflicted with the illness and since I can remember I’ve been an empathetic witness to this debilitating illness. My understanding of sickle cell is that it is an agonizing “ache” which can only be linked to an ice pick being used to scrape the bone marrow from within slowly. As all I see is someone screaming in excruciating pain trying to gasp for air in a moment of relief that never seems to come. Families stand in painful helplessness offering meaningless comforting words. The only thing that can give the afflicted the relief they crave for is either blood transfusions or hard drugs that are pumped into the blood stream. This is merely a temporary reprieve lasting only a few minutes or if lucky an hour or so.
With this disease comes a harsh gamble of making life decisions in which the patient must partake. Take administering pain killers, how often are they to take it? Different specialist have their opinion most of them encourage all their patients to take pain killers at even the hint of slight pain as the later you leave it, the more resistant the body pain becomes to the pain killers which then makes it less effective. However, drugs such as Morphine the medical version of heroine are commonly administered and like the devil that is heroine patients become addicted and ultimately become a slave to the disease and the drug, to a point where they cannot distinguish genuine pain from the junkie itch. Sadly, even these hard drugs are only but a luxury as they are expensive.
Family planing becomes yet another obstacle for both the patient and carriers of the sickle cell trait. As something as beautiful as falling in love with anyone and choosing a life partner becomes one of the toughest decisions they have to take as the saying there is ‘plenty fish in the sea’ literally becomes ‘few fish in their pond’. They have the right to fall in love with anyone they please like we all do but their freedom to marry and reproduce with just anyone is “stolen” so to speak. They must consider genotypes when they fall in love, they must choose wisely even in their pond, because even carriers of the abnormal sickle gene are medically out of their little league. Thus, even love isn’t love for what is love is to be calculated.
Despite these gruesome facts, Sickle Cell as deadly as it is, if treated correctly with the right medication and diet one could live a ‘normal’ adult life; for example something as simple as reducing stress can go a long way in preventing pain crisis from arising. Also not jaring or stressing the body with too much exercise can be useful in reducing the chances of pains occurring. I have family members who live with this condition and have gone on to live relatively normal lives. Some have acquired degrees others PHDs and all have wonderful families of their own.
Awareness is crucial, cancer awareness has led to so many research centres and charities being built. Sickle Cell anaemia on the other hand is foreign to a lot of countries, especially in the western world, where there is better research opportunities and funding can be made readily available to help further research once enough awareness had been raised. Nevertheless, slowly drugs such as Hydrouxea (which is currently the best in the market, yet comes with major side effects) have been developed to suppress the crisis.
There may be no cure for this disease but with awareness and proper medical aid provided to hospitals and governments around the world, it could go a long way and perhaps save a child’s life. This is why organisations such as SCAF are good initiatives to raise awareness and further medical treatment.
Sickle Cell Anaemia is not a death sentence, overcome ignorance with education.