Joy as hope rises for sickle cell patients

By Qudirat Hakeem-Apanpa

The Executive Director, Elewura Sickle Cell
Foundation, Engr. AbdulJelyl Karheem (right)
and the Project Supervisor, Miss Saidat
Adebayo(centre), with another officer of
the foundation, during a visit to the Tribune
House. Photo: Tunde Babajide Sickle cell anaemia is one ailment that is affecting a large percentage of Nigeria’s population, and due to the high cost of treatment, many find it difficult to manage.

A non-governmental organisation (NGO), Elewura Sickle Cell Centre, based in Ibadan, the Oyo State capital and the United Kingdom, has however come to the rescue of sickle cell patients who can’t afford the cost of treatment.

Elewura Sickle Cell Centre is an organisation that caters for sickle cell patients who can not afford to pay for their drugs. Aside from assisting patients with drugs, the organisation puts in place sensitisation programmes to enlighten people about the sickle cell anaemia, while also providing pre-marital counselling to intending couples.

Recently, members of the organisation visited the Nigerian Tribune, where they spoke on the NGOs activities and the reasons for taking up the project.

The Executive Director of the organisation, Engineer AbdulJelyl Karheem explained that as a young graduate, he had always thought of ways he could impact on the society, especially the less-privileged.

“What came to my mind then was in the teachings of the Holy Quran which says: if you save a life, you have saved the lives of the entire universe, and if otherwise, then you have killed the entire universe.

“So, I felt this is the best way I could contribute my service to the society, thereby, saving the lives of those who are in need of medical attentions.”

According to Engr. Karheem, the British Council statistics on sickle cell anaemia reveals that one out of every four children born are sickle cell patients, and research has shown that many children with sickle cell anaemia die before the age of five.

“That is why I want to assist patients in my own little way”, he said, revealing that the NGO spends over N6m to N7m annually and has touched the lives of about 55 people till date.”

Speaking further, the Executive Director said that at a time, the organisation was visiting hospitals, in search of sickle cell patients who could not afford their medical bills.

On efforts at reducing the number of sickle cell patients, Engr. AbdulJelyl Karheem said the Elewura Sickle Cell Centre is in collaboration with the Sickle Cell Foundation of Nigeria, faith-based organisations, schools and social organisations, in order to assist sickle cell patients.

“What we are doing mostly in this respect is that the organisation educates people on the need for those who are intending to get married to know their genotype.

“With this, they will know if they are compatible or not. In an instance whereby the man is AS and the lady is AS or SS, it would be better if they quit the relationship, because one or more of their children would have the SS genotype.

“This is what we are doing to reduce this, as there is no known medication that cures the ailment at the moment”, Engr. Karheem said.

On what parents who have children with sickle cell anaemia could do, the Executive Director said, “such parents should not lose hope, rather, they should pay more attention to such children and follow doctors’ advice on what to do at a particular period in time.

“Such children must also not be exposed to cold and they must not lack multivitamins.

“And when such child is experiencing pains, he/she should be taken to the hospital immediately”.

Engr. Karheem, while saying patients could live long and prosperous lives, gave an example of an 87-year-old man who is a sickle cell patient and managing the ailment well.

Also speaking, the organisation’s project supervisor, Miss Saidat Adebayo, made it known that Elewura Sickle Cell Centre does not give cash to anyone, “rather, we assist in the procurement of drugs.”

“The organisation collects the prescriptions and pay for the drugs. This is necessary because if we give patients money to procure the drugs themselves, many would divert it to other uses.”

Speaking on one of the problems being encountered in the fight against sickle cell, Miss Adebayo said many people don’t even know their genotype and they go ahead and marry spouses who have sickle cell trait like they have, who would produce children with the SS genotype.

“A lot of awareness needs to be made in this area, as this is the basis for the ailment. Our organisation also gives advice in this respect,”the project supervisor stated.

“So, it is better for everyone to know his or her genotype. A person with AS genotype and who marries another person with AS genotype, has a 25 per cent chance that one of their children will be SS.”

“Everybody is needed in this fight, and the media have an advantage, as they reach the public everyday”, Miss Adebayo stated as being the reason for their visit to the Tribune House.