-About 70 million Nigerians are living with the gene
In view of the prevalence of the Sickle Cell Disorder (SCD) in the country, with Nigeria leading with the highest number of people living with the condition in the world, Pfizer Nigeria Plc and Genotype Foundation have called for an intensified campaign on the disorder in rural communities, in order to stem the spread of the condition.
The stakeholders who lamented the mortalityof under five children in affected communities, due to lack of proper knowledge on the disease, noted that SCD is not a death sentence, but knowing how best to manage it, is key to the survival of the patients.
Speaking at the event organised by the Genotype Foundation in collaboration with Pfizer, May and Baker, and others, themed: “Have Sickle Cell? But Sickle Cell have not got you”, the Pfizer Medical Director, Dr. Kodjo Soroh decried the meager information available to people living with the disorder
“Despite the high incidence of SCD in Nigeria, little is still known on the cause and the management of the disorder is still a big challenge, especially in rural communities. Increased awareness is key to reducing the burden because there are also proper management plans for people living with it”, he stressed.
Addressing the participants on the management of SCD, Dr Sanda Ajibola of the Sickle Cell Foundation emphasized the need for parents to know their children’s genotype as early as possible, to prevent infant mortality, because SCD is one of the killers of under five children in the country.
Ajibola who is the Head of Haematology Clinic of the foundation, said about 60- 70 Nigerians are living with the sickle cell gene, which makes it imperative for everyone to know the signs and symptoms of the disorder. He simply described SCD as a group of disorders that affects haemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body.
He listed the hall marks of SCD to include: painful swollen hands and feet in children; yellowness of the eyes; anaemia; swollen abdomen; disappearance of spleen in majority of patients around 9 t0 10 years; leg ulcers; avascular necrosis, infant mortality, and so on.
The haematologist urged the patients to always attend their clinic days, and should be free to discuss with their caregivers on any issue bothering them, because they are in position to help find solution to all challenges of their patients, for better healthcare outcomes.
The convener of the event and founder, Genotype Foundation, Mrs Doris Gbemiloye spoke on the essence of the awareness campaign, saying it is the custom of the foundation to stage an enlightenment programme every September, to create awareness on the management of the disease as well as seek support for people living with the condition.
‘Mommy Genotype’, as she is fondly called, said she has been living with SCD for fifty three years, though she had experienced several crises, but she has survived till now due to God’s grace, better management, and support from family and friends.
She urged every parent of children living with the condition and the public to desist from stigmatising their children, stating that SCD is just a genetic disorder, and that “your child is not a different ball game”.
According to the oldest woman living with SCD, Alhaja Laguda Onikoyi, who was a special guest of honour at the event, but couldn’t make it due to her ailing her, she spoke via a telephone call during the programme and told the audience that SCD is not a death sentence, because she will be 92 years of age, come 10, November 2017.
Mama Laguda who had all her six children through normal delivery and live like every other human being, assured the patients of the possibility of living their lives to the fullest, provided they trust God for sound health and take their medications accordingly.
In addition to the convener and haematologist, other members of the panel who entertained questions from the participants include: Mrs Toyin Adesola, Executive director and founder of Sickle Cell Advocacy and Management Initiative (SAMI); Mrs. Osisami O. Adekunbi; educationist and a carrier of SCD for 52 years; Miss Osasele Esangbedo, caterer and founder of Noah’s Ark Foundation of Sickle Cell, had been managing SCD for 42 years.
All of these people have loads of tales to tell on the journey so far in the management of the condition, but one thing was unique about their stories, it is their determination to achieve their purposes in life, notwithstanding their conditions.
For the executive director of SAMI, she had this to say,”I have been managing sickle SCD for fifty two years, and I can confidently say what every carrier requires to survive. There are a couple of things one needs to be aware of, when you a living with any chronic illness, like SCD. You have to be heavily informed, and you don’t have to wait for others to misinform you, do your research yourself. Understand what triggers your disorder, and then find people that will support you emotionally and psychologically. But if you are among people who will always put you down, and pity you, yourself esteem will drop and you go into depression and emotional stress affect us.
“Secondly, you have to be aware of the proper medical personnel that know how to manage SCD, because not all healthcare givers know how to manage SCD effectively. Then follow up your medicals, because it is observed that a lot of people neglect their medications due to poverty, opting for home management. No, you cannot manage certain things at home; you have to go out there to ensure you get a knowledgeable caregiver.
“Again what you eat, determines how well you live. If you are eating all sorts of rubbish, you should please stop. Even a healthy person needs live food to build his immune system, let alone someone who is living with a chronic condition. It should not be medicines all the time; you need foods to build your immunity. You also need to have positive mind, and a strong faith in God that all will be well”.