By Ifeoma ikem
The wife of the Lagos State governor, Her excellency, Dr (Mrs) Ibijoke Sanwo-Olu has advised parents of sickle cell disorder patients to visit centres for more education and awareness.
Dr. Mrs Ibijoke who was represented by Chief nursing officer, St Nicholas Hospital, Mrs Foluola Sholunke, said this at the annual end of year celebration of the sickle cell club in Lagos.
She noted that children with sickle cell anemia should be taught what to do before any crisis .
She commend the Sickle cell club Lagos for such programme urged them to do more for further education and enlightenment.
The first lady also advised couples to know their genotype because it was necessary as many parents did not put genotype testing into consideration before their marriage.
According to Ibijoke Sanwo-Olu, “sickle cell anemia is recognised as one of the most deadly diseases to humanity. Many homes and marriages have been affected by this disease. As you know, sickle cell anemia is the most common inherited disorder in the world with Nigeria having largest pool of affected persons. There are 40million healthy carriers of the sickle cell trait and over 150.000 children born annually with sickle cell anemia.”
She said it is the responsibility of governments,civil societies, Ngos, individuals and health sector, actors among others to be supportive in ensuring that those who live with sickle cell live a normal life.
On her part, Dr (Mrs) Annette Akinsete, National Director of Sickle cell Foundation Nigeria, said there is need for continuous awareness, education in urban and rural communities where stakeholders, government,corporate body and NGOs should be involved in creating the awareness because Nigeria has the largest number of people living with sickle cell anemia in the world.
Akinsete explained that Nigeria need to be at the forefront of reseach in fight against sickle cell, “we should be in forefront to step up and fill the gap because government can not do it alone Sickle Cell Foundation Lagos has to fill the gap.
According to Akinsete, Sickle Cell Foundation Nigeria was the first of it kind in Africa and other part of the continent where they come for training, “we know how to come up to bridge the gap and also advised couples to come for genetic counselling.”
The President of Lagos sickle cell club, Mrs Ayo Otaigbe said that their effort was to improve the living condition of sickle cell anemia patients.
She said that celebrating them annually was to help them to live normal life without being stigmatized
According to Otaigbe “we are here to celebrate the many successes the club and its members (our warriors) have achieved this year. This event also presents a forum for members to come together and celebrate the goodness and mercy of God throughout the year.
” It also enables members to showcase their diverse gifts and talents.
As you are probably aware, the sickle cell club Lagos Nigeria is a charitable non-governmental, non-profit, patient support and advocacy organization dedicated to addressing the problems associated with sickle cell disorder in Nigeria.
“Today we know for certain over 150,000 children are born every year in Nigeria with sickle cell anaemia while one in every four Nigerian is a carrier of the sickle cell gene. This is by far the largest burden of this disorder anywhere in the world and most of these children would die in child hood from ignorance and lack of access to appropriate care,.”she said
“However, I am glad that due to improved access to better preventive curative health care, more and more persons with sickle cell disorder are surviving childhood and adolescence. A sizeable number of them are now completing educational and job training courses, becoming gainfully employed, getting married and rasing their own families. They are however still prone to periodic and unpredictable episodes of acute illness known as crises and have, on average, a shorter than normal life span.
“Much still needs to be done by way of research and creation of facilities to improve the quantity and quality of their lives.
” This explains why the thrust of club’s activities is to increase public awareness and knowledge of sickle cell disorder through information, education and communication at the community level. We also undertake relevant advocacy initiatives through featured articles and interviews in newspapers and magazines as well as appearance on radio and television.”
Speaking further Akinsete said, “the club continues to collaborate with Sickle cell Foundation Nigeria for capacity development initiatives of health workers.
“2019 has been another busy year with many challenges and we are thankful that we survived another challenging year. The economic situation has impacted many of our corporate partners/donors with the implication that the coverage of our services are limited by lack of resources and inadequate funding.
” Also the improvement we have noticed in the lives of our members is not felt in most parts of the country or even among the millions of the poorer masses in Lagos.”