Toyin Ola (not real name) is an active 28-year-old young lady who enjoys cooking large meals for her friends in her community. She is living with sickle cell anemia. She follows her practice of daily activities in a safe environment because of the nature of the work she does. But she has difficulty in settling down with a life partner that would give her joy in life.
“When my parents lost my brother who was also suffering from sickle cell disease, my mother left the family home for fear of giving birth to more children who would die anyway,” Ola says.
“Now that I am grown and have the disease, I am worried that I might be abandoned,” she says.
This story sounds familiar, as many Nigerian single adults face the challenge posed by genotype.
The World Sickle Cell Day is marked on 19 of June each year. Nigeria with over 200 million people has the largest burden of Sickle cell disorder in the world with over 150,000 babies born with the serious condition every year, where it causes millions of avoidable deaths.
Sickle cell diseases are the conditions caused by the abnormal shape and low flexibility of red blood cells, which are otherwise flexible and round, and the reduction of blood and oxygen caused as these irregularly shaped red blood cells cannot easily pass through blood vessels.
Larne Yusuf , a Lagos-based medical practitioner, says that someone with the Hb genotype sickle cell anaemia (Hb ss) is not advised to marry someone with the same genotype.
“Sickle cell anemia disease is separating marriages every single day. There is lack of information about the disease in Nigeria and a number of people still have myth.”
“There is still high numbers of people with the disease due to lack of sensitisation, where many couples are not screened for the disease before getting married,”
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Lanre said.
According to him, a number of people do not know their genotype before marriage, so they lack knowledge and basic information about what it means for both partners to be suffering from sickle cell anemia.
“It has led to a lot of violence in families, blame, fight, fear, increased frustration which causes parents to separate.’’ According to him, this has led to the death of many children who are in most cases left with no one to take care of them.
“Couples are encouraged to go for screening before marriage to reduce the rate of prevalence and also more sensitisation campaigns should be carried out where parents can receive the information needed to be able to take care of their children with this disease,” he advised.
According to World Health Organisation (WHO), Sickle Cell Disease (SCD) is a major genetic disease in most countries in Sub-Saharan Africa. The trait is now known to be widespread, reaching its highest prevalence in parts of Africa as well as among people with origins in equatorial Africa, the Mediterranean basin and Saudi Arabia.
The prevalence levels in countries such as Cameroon, Republic of Congo, Gabon, Ghana and Nigeria, is between 20 percent and 30 percent while in some parts of Uganda it is as high as 45 percent.
In countries where the trait prevalence is above 20 percent, the disease affects about two percent of the population. The geographic distribution of the sickle-cell trait is very similar to that of malaria.
The sickle cell trait has a partial protective effect against malaria, and this may explain why it has been maintained at such high prevalence levels in tropical Africa.
Those who inherit the gene from both parents do not have this protection. In addition, they suffer from severe effects of SCD and many die before they reach reproductive age.
Adeolu Ogunsanya, a Lagos-based Obstetrician and Gynaecologist says a child suffering from Sickle cell is affected as well as the family and recurrent sickle-cell crises delay the educational and psychological growth of the child.
He further said more Nigerians need to be aware of their genotypes before choosing partners, because a majority of the children with the most severe form of the disease die before the age of five, usually from an infection or severe anaemia.
“Drinking lot of fluids will help patients suffering sickle cell so as not to dehydrate and wearing appropriate clothing to avoid catching cold will help to avoid trigger crisis,” he said.
“Nigeria still needs more awareness. Government and stakeholders should help promote the masses,” said Ogunsanya.
However, there is hope for patients with sickle cell disease, reports from researchers show that the global market for treatment of these conditions is a thriving and dynamic marketplace. With the huge population of people suffering from conditions such as sickle cell anemia, sickle hemoglobin C disease, and sickle beta thalassemia, the demand for new medications that can more effectively treat these conditions is high.
The limitations of the common therapeutic measures adopted presently, including blood transfusions and hydroxyurea, have also been compelling, leading vendors operating in the market to come up with better and novel therapeutic measures for these conditions.
According to the report the global market for sickle cell disease treatment has been chiefly driven by the rising prevalence of these conditions in developing as well as developed economies of the globe.
It also stated that in the near future, the market will be driven by the rising demand for new and more effective therapeutic measures, rising disposable incomes in emerging economies, and improving healthcare services across several emerging economies.
The lack of skilled labour in developing economies could also emerge as a hindrance for the market. Moreover, the lack of medical reimbursement in several countries across the globe, which makes it difficult for low-income groups to continue their treatments and regular dosages, and the high cost of most medications also act as hindrances for the market.
