DEBUNKING THE MYTH
Before, we were told that there is a jazz or juju somewhere. But now, a lot of of us know better. Sickle-Cell is neither “Abiku” nor “Ogbanje” and it is not caused by witchcraft. It is a genetic disorder, inherited from parents to children. It is not communicable neither infectious. It is not a kind of condition you can get by eating with somebody from same bowl or living with someone, not at all. So, there should be no fear. That is why we are worried about stigmatisation associated with this condition. There is no need to keep away from those who have sickle-cell.
As you can imagine, Nigerians believe that blood is life. So, any disorder that affects the blood is serious indeed and affects all organs of the body. Alot of things have been done now, such as new protocol for treatment, management and now they are able to live longer and healthier even though some people still have that thinking that victims do not live beyond some ages, such as 16, 20, and 21 years. All these are myth and if they are properly looked after and managed, they can live long productive life like everyone else.
A hundred and fifty thousand babies are born every year in Nigeria with sickle-cell. And sadly, hundred thousand of them do not live to see their 5th year. Why? Because, there are so many things they are prone to, such as infection that kills them. And if we catch them in time through prenatal diagnosis and new-born screening, hence, we get a prompt diagnosis, begin to manage and prevent them from infections.
NEW BORN SCREENING
It involves interventions, such as:
• Daily antibiotics (penicillin): It is simple, cheap and easy to access) and
• Immunizations against infections that cause meningitis and pneumonia.
Couples could discover their own genotype and their unborn child’s genotype in any pregnancy so that they would know what they are getting into. Even if you are having a pregnancy with someone whom is a carrier like yourself and you are likely to have child with sickle-cell you can make that determination in early pregnancy. So, you will relax and all the anxieties will be out and enjoy your pregnancy. Also, having sickle-cell is 25% chance neither 100% unlike what people think. It is 1 in 4 but it is in every pregnancies.
RELATIONSHIP BETWEEN SICKLE-CELL DISEASE AND STROKE
The problem with sickle-cell lies in the red blood cells. The red blood shape is different instead of being nice, round and flowing easily within the blood vessels. They are crescent shape like a sickle, so they begin to block the vessels (they gather and clog the vessels) which prevents blood from getting to the tissues and organs (starving them with oxygen), then stroke occurs. If this happens in the brain, stroke ensues. Invariably, when older people have stroke, it is usually called haemorrhagic (i.e. break in vessels). But in children, it is usually blocking of a vessels that causes the stroke.
“And something I must point out here is that, you would not always see them with paralysis like you find in adults. It might be that their handwriting has changed (a child that writes eligibly begins to write scrawly and illegibly). Sometimes the face and smile is no longer nice (one side would be drooping). They might be no paralysis, such as dragging the feet. But they might be little sign that might be early which we can catch in time.”
The best treatment is prevention. The only way to avoid sickle-cell is by knowing your own genotype. And if you are a carrier, marry someone who has gene different from yours.
Many people find it difficult to believe that a child (such as 2, 3 or 4 years old) can have a stroke, because stroke has been associated with old age, hypertension and paralysis (one side of the body is paralysed). Parents are encouraged to determine the risk of stroke including their children between the ages 2 and 16 years (which is when they are prone to have stroke). It involves scanning the vessels membrane and tells us those who are in high risk and we take them aside and treat them to make sure they do not have stroke. We institutes preventative measures including blood transfusion to prevent crises.
Stroke is best prevented, because, when it happens the dynamics of the family changes completely.
“They is a child that I can not forget. They (the child and his companions) came to our centre to determine the risk of stroke. He came on a Friday after close of the day. We said, “OK, come Monday please. Do you know that this boy walked in on Friday but on Monday when he arrived, he was on his father’s back? He had suffered a stroke just a day before. It is so hurtful, and it could have been prevented.”
EXCHANGE BLOOD TRANSFUSION
We remove most of the blood and put blood A of genotype A (i.e. removing all those sickle-cell that tends to clog the vessels) to prevent another stroke from occurring because once one stroke occurs there is a very chance for another stroke to occur. If you are lucky to see the symptoms, it is best to intervene quickly with this exchange blood transfusion.
It is difficult for children to express what is in their mind. So, art therapy helps children to cope with their condition and to express themselves. They are able to paint and counselors use their paintings to counsel them.
That is why it very important for parents to wash out for this signs rather than depending on the child to say “I am feeling this, I am feeling that”. They may not know the difference.
“If a child is down with sickle-cell or not, it behoves on you to take charge and not just brush up the child, like “Go take… “, “I don’t have time for you”, etc. Not to talk of a child that is challenged by sickle-cell.”
CURE FOR SICKLE-CELL
They is cure for sickle-cell. Nigerians who have the means have been accessing these treatments abroad, mostly in the UK and America, sometimes in India. It is called bone marrow transplantation.
The Sickle-Cell Foundation of Nigeria is bringing the treatment to Nigeria. It is going to be sited in Lagos State University Teaching Hospital (LUTH) because it requires 24 hours hospital support.
Bone marrow transfusion is not surgery, it is just like blood transfusion. Bone marrow is that part at the centre of the bone (just like what you have in the chicken that you suck after eating the meat). That is where all blood cells are formed. We get marrow from a donor (whom should be a sibling of the child who has sickle-cell and it must match) from the hip bone and tranfuse it into the bone, like blood. Then, the cells finds their way in to the bone marrow. If the genotype of the child is SS before, then he or she becomes AA or AS depending on what the donor is.
It takes about three to six months for every thing to be okay. The doctors who do this procedure are very selective of who they do it for. Usually, they won’t take patient older than seventeen years of age so that they would have a good success rate. Because the older you are, the more you are likely to reject anything injected in to you.
THE COST OF THE CURE
It is going to be available in Nigeria at Lagos so that Nigerians will be able to access it locally, rather than travelling abroad with very exorbitant price (a million dollar in America). The price in Nigeria will be much less in Nigeria. There will be no travel costs, no burden. By the end of the first quarter of next year we should be up and running.
Thanks to Lagos State Government through Governor Akinwunmi Ambode. The Governor donated two hundred million naira in to this project. So, it is wonderful that we are going to have it in Nigeria.
Remember health is wealth and take good care of yourself.
Note: Kindly visit National Sickle-Cell Centre, located at Ishaga road, Ìdí Araba-Surulere, Lagos, opposite Lagos State University Teaching Hospital (LUTH) for more enquiries.
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