Lawrence Nwimo, Awka
The National Coordinator, Association of People Living with Sickle Cell Disorder (APLSCD), Mrs Aisha Edward-Maduagwu has described the community of persons living with sickle cell disorder as the most neglected group in the society, particularly in Anambra State.
Maduagwu was speaking to Ikengaonline on Saturday when she said that her group is the most discriminated among all groups living with ailments and other challenges in the state and Nigeria at large.
Ikengaonline reports that the case of persons living with sickle cell disorder was brought to the fore during the birthday anniversary celebration of Maduagwu, who doubles as the Director of Sickle Cell Orphanage Home Agulu in Anaocha Local Government Area, Anambra State.
The event, which took place at the orphanage home attracted stakeholders from the Agulu host community, including members of the Association of Friends International, a body dominated by retired professionals whose interest is to help mankind, give succour to the less privileged and the needy.
Speaking during the event, Maduagwu said her members suffer neglect, discrimination, and humiliation at the hands of family, caregivers, medical personnel, government officials, and the general public due to their medical status in society.
According to her, “You have the community of the Disabled, the Albino, that of Down Syndrome, but it is only the sickle cell children that you find in the society that is most discriminated against among all persons living with body ailments and challenges.
“The society made it so bad for us that we have to look a certain way. Certain sickle cell children have taken their own lives in adulthood as a result of neglect, punishments, rejection, and lack of sense of belonging. These are people that go to the extent of taking injections to kill themselves because of depression.
“Sickle cell children are the only ones that have a certain medication that we use for management and maintenance, which is a pain killer. The higher the pain, the more the doctor prescribes Opioid drugs for you.
“The more we take Opioid drugs, the more we become addicted to those drugs. And once we become addicted to those drugs, we can no longer live a normal life without those drugs. Within our peers and family circle, we are now viewed as drug addicts, for no justifiable reasons.
“Sometimes, it is even our caregivers that inflict addiction on us due to lack of professionalism. This happens when a sickle cell child has a crisis and cries at the top of his/her voice, the nurse and the doctor feel so lazy to give the needful treatment, but instead, they give that Opioid drug to shut us up and force us to sleep.
“Consequently, we are inflicted and converted to become vegetables for experiments for some kind of research. When we begin to take these drugs, our parents don’t feel too good because they spend so much money. The money used in raising one sickle cell child is what can be used to raise 10 normal children. Because the frustrations associated with sickle cell persons are enormous, our parents, most times, voluntarily throw us away.”
Recounting the ordeal of her group during the period of COVID-19 pandemic, Maduagwu said: “When Covid-19 broke out, the economy bit hard. The neglect suffered by most of them ( sickle cell patients) were so much that they were treated like a pariah by even their families.”
She said the neglect and feelings of being abandoned forced most of her members to resort to sleeping in churches, which she said further exposed them to severe medical challenges.
Edward-Maduagwu regretted that despite efforts being made to cut down the number of children born with sickle cell disorder and other perinatal sicknesses, especially in Anambra State, some people still pay less attention to the risks of getting married without due health compatibility assessment.
She also lamented that despite the provisions of the sickle cell law, which was signed in 2019 by the Anambra State Government, such provisions are yet to be implemented. According to her, that may have been used by politicians to achieve headlines and score cheap political goals.
The activist recalled that she left the Nigeria Military, where she had worked for the Media and Information Department, to extend love and care, which she had been privileged to enjoy over the years, to the people of her kind in the society.
Speaking further, she said her decision to set up APLSCD was driven by the desire to provide succor, welfare, and shelter for her kind who have suffered several degrees of neglect from families, governments, and society.
She said the Association has provided scholarships to about 80 of its members, established a vocational center in Agulu for its members, paid hospital bills for many, and had taken up the entire hospital and crisis management for some who have no one to cater for them.
She also said the association had, through support from renowned Anambra Billionaire Chief Arthur Eze, completed a sickle cell rehabilitation center in Ukpo to give her members immediate and accessible medical attention, but regrettably, the center is currently underutilised due to the distance and financial limitations.
Maduagwu, who is the Director of Sickle Cell Orphanage and Underprivileged Home, Agulu said it was established to accommodate children that are neglected and abandoned by their parents.
She explained that having the disease does not consign one to death and that people living with it can still pursue their lives’ goals.
While she appealed for supports to make the Home a better place, she regretted the stigma that comes with the negative perception of persons with sickle cell disease.
She averred to continue using the orphanage home to correct such impression and to beat the conventional narrative that sickle cell children should look sickly, tattered, and disjointed.
