Laughing in the Face of Sickle Cell
When many people hear about Sickle Cell, what comes to mind ranges from fear and panic (especially for parents whose children want to marry a person with Sickle Cell) to the ‘death sentence’ – that ever-popular saying especially in Nigeria and to an extent other African countries that ‘people with Sickle Cell don’t last’, to the issue of financial expenses – what I like to call the ‘pocket drain syndrome’.
Seeing a person with HbSS with a full-blown crisis is another matter entirely – especially if it’s your first time experiencing them in that state. Depending on how bad the crisis is, it may leave them in excruciating pain for days which means they can barely do anything themselves – not even bathe – yes, it could get that bad, but that’s not all there is to Sickle Cell.
People living with Sickle Cell have made it to the top of their careers retiring as Managing Directors in banks, academically some have not only become PhD holders but are now Professors on the way to heading their departments and faculties, in the creative industry which is known for its demanding and stressful nature, they have headed teams while some are close to becoming Creative Directors of agencies. There are also currently countless numbers of doctors, surgeons and nurses who are living with Sickle Cell all over the world.
So you see, people with HbSS are not to be pitied but respected, they are not to be ostracized but venerated and adored, they should not be labelled by their genotype but by the contents in their heads and what they have to offer the society, they should not be rejected or left heartbroken but should freely be allowed to love and be loved in return.
Interestingly, the journey to becoming a person living with Sickle Cell does not start with that person, actually, it starts with the parents and the decisions they make. For example, if singles are aware of their genotype whether AA, AS, SS, AC, SC, etc. Then they should know that to avoid having a child with Sickle Cell if they are genotype AS, AC or SS or SC, they should consciously seek to marry someone who is genotype AA. Now you may think what if I can’t find anyone who is AA to fall in love with and my biological clock is ticking? or I have set a timeline to when I want to get married and no AA persons are coming along or even I have fallen heads over heels in love with someone who is not AA what should I do?
Well, all hope is not lost. It still boils down to your decisions. You see a discussion with Prof. Akinyanju, the Chairman of the Sickle Cell Foundation some years back revealed that you can actually marry this person and when you get pregnant you can test for the child’s genotype and if the foetus is HbSS you are left with the decision whether to terminate the pregnancy or bring the child into the world – but we know there are religious and ethical issues to this – but this is a decision you have to make and live with the consequences. Secondly, he spoke of the option of IVF – In Vitro Fertilization.
Now mind you, this option is expensive, may sometimes fail but when it’s effective you can have your healthy non-SS children by fertilizing the eggs of the mother with the sperm of the father and then undergoing pre-implantation genetic testing to ensure only the non-SS zygotes are placed into the womb of the mother.
The choice is yours to pick which works best for you, as long as you consciously prevent the incidence of having an SS child.
The information above may not be known to many, while others have gotten married without having a genotype test leading to the birth of a child with Sickle Cell, but with improvements in treatments such as Exchange Blood Transfusions where the SS blood of the patient is replaced with AA blood thereby reducing the incidence of crisis, complications and improving the quality of life of the child or adult as the case may be. There are also drugs like Hydroxyurea which are prescribed to patients who have recurrent crisis episodes, and this helps to reduce the frequencies of painful crisis.
It gets even better! With advances in medical sciences, bone marrow transplants have been performed on children and adults alike which have successfully left them free of Sickle Cell, though a caution here is that such individuals still have to either marry people who are AA or go through the other processes described above. This procedure has been performed in Nigeria, India, South Africa, USA, and other countries successfully. Other new technologies are found in this link here:
where a procedure was successfully carried out on a woman with HbSS in the USA and she is now living free of the symptoms of Sickle Cell.
An important point to note is the role of government in providing necessary funding which will allow citizens irrespective of their social status access to the needed drugs, healthcare, and continuous research into new and effective ways of managing Sickle Cell. Hospitals should be well equipped and teaching hospitals should encourage doctors going into the field of Haematology as there is currently a scarcity of them in our nation. Additionally, the government may need to pass a bill that will hold parents accountable or liable to lawsuits going forward by their children born with Sickle Cell for not taking the right precautions to prevent them from being born with it.
That said, society also has a huge role to play. You can lend a helping hand to a family or person you know who has Sickle Cell but does not have the needed finances to treat themselves. Hospitals can also treat a number of patients with Sickle Cell at discounted fees as part of their CSR activities.
The HMO – Health Management Organizations also have to have a more humane approach to ‘customers or clients’ with Sickle Cell. While some will blatantly refuse to take on such individuals, others charge a premium that is the equivalent of two arms and two legs – if you understand what I mean, and when they do take them on, they are given – in some cases limited access to services, forcing them to pay out of pocket – which is more expensive.
After all said and done, Sickle Cell is not a death sentence, just as Covid 19 is not a death sentence. Do people with HbSS suffer complications? Yes, they do – sometimes, not all the times, and if these are quickly nipped in the bud they’d come out as good as new.
An important aspect of coping with Sickle Cell is faith, meditation and prayers, which fills the heart with hope and the body with the strength to keep fighting. Positive scriptural confessions like ‘by His stripes, I am healed’, and ‘I shall not die but live to declare the works of the Lord’ works wonders on the mind, soul and body as you surrender yourself to God to heal you, and interestingly, He always comes through, after all, He is Jehovah Rapha – God your healer.
It’s encouraging to note that there is a conscious effort on raising awareness of Sickle Cell, which is why the month of September has been earmarked as Sickle Cell Awareness month. Ok… this is coming a little late, but better late than never right?
Find below a compilation of some stories, articles and a video by different individuals aimed at raising awareness of Sickle Cell:
Sickle cell and truth hiding (II)
So you see, in spite of all that has been said about Sickle Cell, you can still make the best out of it and rock your life to the fullest. So here’s raising a glass of milk, zobo, soft drinks, non-alcoholic wine, champagne or whatever you have in your hands to the greatest, most inspiring warriors on the face of this planet!
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