Chinyere Abiaziem / Reporter, Lagos
Through no deliberate fault of theirs, they are born; some out of ignorance on the part of their parents, but for many couples, it is the yearning to share love and companionship unsure of the consequences of their action, bring children with the Sickle cell disease m(SCD) into existence.
Dr. Motunrayo Adekunle (left), receiving the ‘ Best Participant Award’ from Prof. Olu Akinyanju, Chairman, Sickle Cell Foundation of Nigeria and Dennis Okoro, Director, MTN Foundation, during the graduation ceremony of the 17th Genetic Counselling Training Course, sponsored by the MTN Foundation
It saddens the heart however when one watches how the society treats people living with the sickle cell anaemia with disdain.
They are often looked down upon as weak and sometimes too as inferior, since they do not often exude much energy as those with healthy genotypes and as such tend to suffer different forms of crises.
The Sickle cell disease (SCD) is known as a group of disorders that affects a person’s haemoglobin which is the molecule in red blood cells that delivers oxygen to cells throughout the body.
SCD is a serious disorder in which the body makes sickle-shaped red blood cells. “Sickle-shaped” means that the red blood cells are shaped like a crescent. The Sickle cells contain abnormal haemoglobin called sickle haemoglobin or haemoglobin S. Sickle haemoglobin causes the cells to develop a sickle, or crescent, shape.
Identifying with the plight and side-lining of sickle cell carriers, The Sickle Cell Foundation of Nigeria, Lagos in partnership with MTN Foundation and Lagos State recently organised a Genetic Counselling Course for the Carriers and non-Carriers of the Sickle haemoglobin to empower them in the management and controlling of the disorder.
At the17th Graduation Ceremony Foundation, which took place at the weekend in Lagos, a Carrier shared a bit of her experience in a chat with our Correspondent.
Although she wished to remain anonymous, the young woman with so much enthusiasm told our Correspondent, “Contrary to the general assumption that people with the Sickle Cell disorder often look pale, you can see that I am so full of life and I have health”.
“In her words: “ I do not care if the whole world stigmatises me, I am proud of my genotype, even if others are not, I am proud to be living with the sickle cell disorder. I see discrimination everywhere, especially in this part of our world. Some Nigerians discriminate against and stigmatise people with the sickle blood cell as if they are HIV positive.
“They feel we are inferior and do not have anything to offer, meanwhile quite a number of us are intellectually endowed and very artistic. We get to receive all sort of ill treatment from our places of work, learning and business.
“I can still remember how I fell from my bed in my room in the hostel. I was weak and could not stand to get my medicine from the shelf, I tried getting my roommate’s attention but she pretended not to hear me call her.
“In a bid to stretch and get the medicine myself I fell off my bed. If not for my other room mate who timely walked into the room, I do not know what would have become of me that day. She was the one that raised alarm and went straight to call the School Porter who quickly arranged for an ambulance and I was rushed to the clinic.
“It is not new that some of us hide and isolate ourselves; some are shy and not willing to identify with a Sickle Cell Foundation as this. Some of my friends back in the University were ashamed of opening up and associating with the school’s sickle cell body. They were more concerned about what people will think or say about them instead of charting a course for their lives in terms of getting help and useful information to influence them in making wise decisions even in the area of whom or not to marry based on genotype.
“Personally, I have being benefitting a lot from this Foundation here, though I am yet to undergo the Genetic Counselling course but I get free drugs every month. I also have the privilege of interacting and rubbing minds with great people. I hope to revisit my school and fully establish a sickle cell club with the help of this foundation” she noted.
But what really is the essence of a counselling course on Genetics? Explaining the reason for the introduction of a course as this, Chairman, Sickle cell Foundation, Nigeria, Prof. Olu Akinyanju said the training was established to seriously tackle sickle cell disorder in Nigeria because it is widely identified as the most cost effective intervention for initiating sickle cell programming, particularly in resource poor countries.
According to Professor Akinyanju, the role of a genetic counsellor is to ensure affected persons, caregivers or healthy carriers are provided with all the necessary information to make them understand or cope with sickle cell disorder alongside making informed decisions on any course of action including marriage.
He added that; “Trained Counsellors also help form and run support and advocacy associations such as Sickle Cell Clubs and promote the development of dedicated Sickle Cell Clinics and other beneficial facilities in their communities.”
While mentioning that with continual research, the disorder can be converted from a deadly childhood disorder resulting to a short life span to an improvement in health and longevity of the people living with it.
Corroborating what he said, the best graduating participant out of 16, Dr Mrs Motunrayo Adekunle who is a Senior Registrar at the Department of Paediatrics Lagos State’s Teaching Hospital (LUTH), expressed that a lot has to be done in terms of empathy and research in bridging the gap of genetic disorder in Nigeria. As According to her, “There is need for more genetic research especially sickle cell, for us to bridge the existing gap.”
As part of the education and enlightenment, Akinyanju advised intending couples to always check on their genetic make-up to know if they are compatible to marry and raise children.
Explaining, he pointed out; Sickle cell anaemia is an inherited, lifelong disease. People who have the disease are born with it. They inherit two genes for sickle haemoglobin—one from each parent.
People who inherit a sickle haemoglobin gene from one parent and a normal gene from the other parent have a condition called sickle cell trait.
Sickle cell trait is different than sickle cell anaemia. People who have sickle cell trait don’t have the disease. Like people who have sickle cell anaemia, people who have sickle cell trait can pass the sickle haemoglobin gene to their children.
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