By: Ifeanyi Okonkwo (Anambra),
Speaker Anambra State House of Assembly (ASHA), Rt. Hon. Rita Maduagwu, has assured the Association of Persons Living with Sickle Cell Disorder (APLSCD) that the bill, “Sickle Cell Eradication”, would soon be passed into law.
Hon. Maduagwu, made this statement in her address to members of APLSCD, at Anambra Broadcasting Service (ABS) field on Tuesday 19th June, 2018, in Awka, Anambra state.
You would recall that June 19th every year has been a day set aside by the World Health Organization (WHO) to commemorate the “World Sickle Cell Day” and APLSCD in collaboration with Police Officers Wives Association (POWA), celebrated this year’s edition.
The Speaker was represented by Hon. Charles Ezani, Member representing Anoacha 2 Constituency, who also doubles, as the Chairman of the occasion.
Hon. Maduagwu, who has been working tirelessly with other members of the House of Assembly in making sure that the bill sees the light of the day, encouraged the association not to relent in its effort in sensitizing the public about sickle cell.
On his part, Chairman of the occasion Hon Charles Ezani, said the bill has been handed over to the Committee on Health at the House of Assembly for final deliberation.
Hon. Ezani, advised intending couples to check their genotype in other to know their status so that sickle cell will be eradicated.
He continued by saying, “The sixth Assembly is saying a total no to partners, who have neglected in knowing and verifying their status/genotype”.
The Chairperson, POWA, Hajia Khadjah Fayek-Umar in her speech said sickle cell has affected and killed a large number of people worldwide. She called on the public to add their voices in creating awareness about the dangers of sickle cell in the society
Hajia Khadjah Fayek-Umar, who was represented by the Secretary of the Association, Mrs. Chinenye Tope Fashipa, explained that some of the children of police officers have sickle cell disorder, which has prompted them to be part of the movement.
She concluded in assuring APLSCD of its support, encouragement and assistance anytime they are called upon.
National Coordinator APLSCD, Mrs. Aisha Edward described APLSCD as, “An association based on love, care and welfare of persons living with sickle cell disorder and these principles have guided its activities from inception till date”.
Mrs. Edward lamented over the treatment from the society to people with sickle cell disorder saying, “Over the years, people living with sickle cell disorder have suffered degrees of neglect and contempt from the society and worst of it all by their families. They are considered second class citizens and have been denied opportunities due to their health conditions as this is not their making”.
According to the coordinator, the association has continued to create awareness on the importance of genetic counseling and knowledge of individual genotype and its implications to advocate for special care and protection to children with sickle cell through proper nutrition, protection from extreme weather condition and malaria.
Guest lecturer, Dr. Okocha in his lecture themed, “Attitudinal Change”, stressed on the pain, regret, sadness and suffering inflicted by sickle cell to victims and their family.
Dr. Okocha advised that, “People should start doing the right things by not allowing themselves to be blinded by love”.
He urged that treatment should be provided to those already living with sickle cell and legislators should convince the elites in the society to contribute to the sustenance of people living with sickle cell.
Mr. James Nduka, one of the persons living with sickle cell who spoke to REALITY, said, “I am here today because I have survived! Battles have been fought, casualties recorded but I survived. We will soldier on! We will keep lending our voices to the fight of sickle cell disorder”.
Another person living with sickle disorder, Mrs. Joy Uzor, said, “No matter how others disdain us, we owe a duty to ourselves to make sure our voices are heard. The scars are there, the pain has not gone away, and the midnight tears are a constant reminder of the battle we have to fight. We will never stop!”