Saturday, 2 May 2015

SS: The reality of living with Sickle Cell Anaemia



I know when a lot of people hear the initials SS or the full name Sickle Cell Anaemia, they will flinch, some will raise eye brows and others will be gripped with worry, concern or some other form of anxiety. And if some day they are told they are SS they will certainly freak out, wondering what society will say, how they will be treated by their peers, friends, colleagues, etc.
But why is this so?
Sickle Cell Anaemia (SCA) also known as Sickle Cell Disease (SCD) a genetic disease which affects mostly people in Africa and in the West Indies and or people with genetic backgrounds from these parts, has often been looked upon as a mystery disease; with some tribes attributing it to sorcery, others treating the children born with it with suspicion or distaste. So many clich├ęs about the disease which are not true but which over the years have been spread around and accepted by the public as true.
So what exactly is Sickle Cell? 



Sickle-cell disease (SCD), also known as sickle-cell anaemia (SCA) and drepanocytosis, is a hereditary blood disorder, characterized by an abnormality in the oxygen-carrying haemoglobin molecule in red blood cells. This leads to a propensity for the cells to assume an abnormal, rigid, sickle-like shape under certain circumstances. Sickle-cell disease is associated with a number of acute and chronic health problems, such as severe infections, attacks of severe pain ("sickle-cell crisis"), and stroke, and there is an increased risk of death.
Sickle-cell disease occurs when a person inherits two abnormal copies of the haemoglobin gene (S), one from each parent. Reason why someone with the full disease is said to be “SS”. Several subtypes exist, depending on the exact mutation in each haemoglobin gene. A person with a single abnormal copy does not experience symptoms and is said to have the sickle-cell trait, otherwise described as being “AS”. In simple terms this means that person has the sickle genes but does not manifest the full disease. But if he or she gets married to another person with “AS” genotype, the chances of them having children with the full “SS” will be 50:50. In the case of someone who is “SS” that is has the full disease, the chances of them getting more if not all their children having the full disease becomes greater if they should marry someone who is either “AS” or “SS”.
One more thing about Sickle Cell which makes the paranoia surrounding it greater is the fact that there is no cure. The only way of preventing the disease is by cutting off the “S” or sickle cell genes off a patient’s generational bloodline by marriage with sickle cell free people; those described in the medical term as being “AA”.  This is the reason why an electrophoresis is required prior to marriage to permit would be spouses to avoid getting married to someone who has the AS or SS genes like them.

The fact that the disease is hereditary and that there is no cure,  should not be a call for alarm. In fact, children born with the disease can have normal healthy lives with the right amount of exercise, good feeding, proper rest and drinking of lots of water. Children or people leaving with sickle cell are just like any other person who gets a cough or a cold. Their disease is not contagious and having it does not affect their ability to work or study in any way. In fact a lot of children with this disease are most often very intelligent. 
I know at this point a lot of readers will wonder why I say having sickle cell should not be considered as a fatality, what makes me an expert? Well, my reason for saying so is this is that for over 30 years I have lived with the disease as I was born with it.

Reading all about the disease above would make many people wonder why someone with a disease lots of people are yet to understand come out in the open and write about it. But to me writing this piece is to get people, parents, friends, colleagues to know that being born “SS” does not make people with the disease any different from any one else but also to sensitize the public on how to react when confronted with others in their entourage diagnosed with sickle cell anaemia.
My encounter with the disease started back in my primary school days when I, two of my brothers and an elder sister where diagnosed with the full disease while one brother and another sister had the genes but not the disease. Then very little was known of Sickle Cell and a family like mine with four children having the disease was considered a huge misfortune.
The good thing is my parents never let that weaken their resolve to make us exemplary citizens. Being pedagogues, with very strict principles, my parents taught me and my siblings that we were not different from any other children despite the finger pointing at school. We were trained to earn everything we had. We were taught that hard work pays; at a very young age I learnt how to do things lots of normal children my age would not like doing. I went to the farm on holidays, cultivated cassava, melon, yams, plantains just to name a few and during school days I walked to school. Most times the distance was very long but I walked at my own pace and as my strength will permit me too not because there was no car, but because it was part of my upbringing.
The hard parts of living with the disease were the periods when I got malaria and that triggered intense pains in my bones, particularly around the joints. Having a C-shaped red blood cell instead of a circular one meant that during such crisis my red blood cells will not normally move as a circular red blood cell will and these were the moments of horror for me.  Those where the times when I learnt to develop a strong faith, in myself, in God. At a very young age I learnt how to have a strong will, and keep a positive mind frame. Being fearful never did anyone any good, not even to none sickle cell people.
The moments of illness where very expensive then and living in a country like Cameroon where health care is still very expensive and access to good medical care a problem, my parents learnt to prioritise on our feeding. Good feeding made up of lots of fruits, vegetables and lots of water. That in addition to the constant intake of Folic acid, proper rest and little stress and strain kept all four of us alive and well until the day one of my siblings died as a result of medical negligence. One secret about people like me with such a genetic disease is that we should never be administered glucose as drip. When an “SS” patient gets ill, their health record needs to be reviewed by the doctor they consult. In most cases it is advisable for them to have a specialist who knows their health history, in this way errors that can be fatal are avoided.
I remember there were days when the money was there to buy the drugs we needed but the drugs were not available because the roads were too bad and the cars bringing medical supplies could not reach the hospitals or pharmacies in the towns we were living in. Those where scary moments when I came close to death more than once but also when having parents who did not give up paid off. But presently new innovation in technology and new medical research has made health care for people leaving with “SS” a little less expensive.
For me the worst part of living with the disease was the treatment I got from some of my school mates especially while in primary and secondary school. The isolation, the taunts and later on the analysis by prospecting husbands and their families who would cross examine me as if my having sickle shape red blood cells automatically ticked me off the marriage charts. But I learnt to soar above all these.
Presently as an adult, and a journalist, I look back at those moments and realise they made me who I am now. Hard working, strong with experiences that I now share with others, for them to understand their children or sibling or friends are not witches or wizards as some people will want them to belief and they are not misfits either. They just have red blood cells that have a different shape than that of others, period.
Like any other person with rights, they need to be loved, to be believed in, to be given a chance to work, to go to school,  to be treated with respect by their peers or school mates, friends and family. They like anyone else are part of Cameroon’s future, they are future leaders and their ability to be that has nothing to do with the type of red blood cells they have but rather the kind of chances and opportunities given to them by those around them.

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