Int’l Sickle Cell Day: Visit sickle cell homes, identify with orphans & carriers, patients plead
Members of the Association of People Living with Sickle Cell Disorder (APLSCD) have commemorated the International Sickle Cell Day on June 19, 2021.
During the event, sickle cell patients pleaded with concerned Nigerians to visit sickle cell homes and identify with orphans and carriers and show them love.
Below is the address presented by APLSCD National Coordinator, Aisha Edwards Maduagwu, on the occasion marking the International Sickle Cell Day on 19th June 2021 holden at Madonna Catholic Church, Agulu, Anambra State:
It is with humility and deep sense of gratitude that I welcome each one of you to the annual commemoration of the international sickle cell day.
It a day specially set aside worldwide to hold formidable and far reaching sickle cell awareness through conferences, workshops, media parleys, while critically weighing the extent of damage of sickle cell menace, with a view of finding lasting solutions.
Diverse topics on sickle cell disorder would become the dominant discussion for that day among sincere government decision makers, especially countries ravaged by the disease like Nigeria.
Genuine sickle cell advocates around the world also take June 19 as a time for reflection and to better channel their resources towards a more effective way to tackle sickle cell disease.
Sickle cell research centers around the globe make pronouncements on the progress of their research in finding a cure.
According to a demographic health survey from WHO Africa, It is estimated that over 300 000 babies are born with sickle cell disease in Africa every year, of which Nigeria and the Democratic Republic of Congo have the most prevalent cases, with high mortality rate between birth and their fifth birthday.
Malnutrition has been pointed as the major factor contributing to this high mortality rate.
For us at the Association of People Living with Sickle Cell Disorder, today is special and quite remarkable for us because we would be remembering our dearly departed members that lived and died with sickle cell disease.
We would also find a way to console families whom had cause to loose their loved ones to sickle cell disease. Family is everything, and it is the family that responds first to shoulder the responsibility of having a sickle cell child.
By so doing, we would demonstrate how important sickle cell sensitization is to the family unit which is the distinctive feature of every society.
In this campaign to eradicate sickle cell disease in Anambra State and Nigeria at large, our association is desirous to join hands with willing partners in upholding “ZERO TOLERANCE,” with intending couples facing genotype incompatibilities.
Every measures should be employed to discourage such couples from going ahead with their marriage plans. The church and town union organizations should not shift ground when screening couple for genotype compatibility, either in for their Christian or traditional marriage ceremony.
Another important factor in the campaign against this hydra headed monster is to assist poorer families in taking care of their sickle cell relation, with strict compliance to medications, nutrition, hygiene, therapeutic relaxation, while also considering education and skill acquisition as viable means of livelihood and economic sustenance in building an independent future at adulthood if fate wills it.
APLSCD has proven that capacity over and over again and can be trusted with resources to yield maximum results.
The numerous feats recorded in a short while by the association, speaks volumes of our integrity, resourcefulness, determination, and accountability as a corporate existence.
A popular notion is that the amount spent on managing one sickle cell child to adulthood, can as well measure up with what is utilized in the training of about three healthy children of the same age bracket running concurrently.
We are already thinking of ways to curb fresh challenges of inadequacies encountered with the numerical rise of membership in our books, as carriers are now coming out from their shells after years of stigmatization and hopelessness.
They would all be keyed into the developmental plans of the association.
The Sickle Cell Orphanage and Underprivileged Home Agulu, has brought succor to many sickle cell orphans and patients passing through neglects and cruel hardships. It exudes a peaceful atmosphere that can be called home.
Our monthly medical interactive sessions always have visiting medical teams from Nnamdi Azikiwe University Teaching Hospital Nnewi, to educate, treat and carryout comprehensive tests on all members free of charge.
These series of medical tests conducted has significantly proved effective for the beneficiaries, as any hidden ailment would be detected and treatment follows promptly.
It also affords patients the freedom to ask their caregivers pertinent questions bothering on their various and peculiar sickle cell related challenges.
In all these campaigns by the association , the Anambra State Sickle Cell Law 2019, which the association earnestly pursued at every turn of the legislative process and accent is now a fleeting glance of heartbreak for persons living with sickle cell disease in Anambra State.
We had expected a bulwark that would aid in the fight against sickle cell disease, but was met instead with dismay in an apparent lack of seriousness and political will by those saddled with the full implementation as empowered by law.
Persons living with sickle cell disease who longed for the respite which the sickle cell law promised had their hopes dashed to pieces and sadly, gave up their ghosts too. Persons living with sickle cell disease in the State continue to die in avoidable circumstances.
Provisions of the sickle cell law like health insurance, access to blood banks, economic welfares, etc. remains a mirage.
Their deaths should draw the needed public attention and condemnation against institutionalized corruption and sponsored provocations targeted at persons living with sickle cell disorder.
Let it ring or sink down in every ears and hearts respectively that sickle cell disease should not be given any foothold to fester. This is a solemn declaration of our tenet and what the association stands for.
We did not call ourselves to contend with such an onerous and multifaceted ailment like sickle cell, but gladly our strength comes from God, and we are already on the threshold of victory.
Our thankful hearts goes to everyone whom had been supportive to our cause, the Catholic Bishops of Awka and Ekwulobia dioceses; the Anglican Bishops of Aguata and Onitsha dioceses; Distinguish Senator Dr. Patrick Ubah; Hon Engr. Johnbosco Onunkwo; Chief Victor Umeh, and other benefactors, friends and well-wishers too numerous to mention.
Our warm regards also goes to the good people of Agulu community with mention of the traditional ruler, HRM Igwe Innocent Obodoakor, thanking for every hospitality and support coming through some eminent sons and daughters.
We wish to acknowledge our chaplains for their fatherly and spiritual assistance towards our welfares. The our experience with them has been beyond satisfactory.
The medical team from NAUTH Nnewi has been awesome in the discharge of their duties. We cannot easily forget the media houses that had been helping us in sickle cell sensitization for wider coverages. Bravo! Bravo!! Bravo!!!
Lastly we wish to appeal to everyone to gladly support the association by donating towards equipping the newly built vocational center that would be commissioned today to the glory of God.
Also encourage us by visiting the sickle cell home to identify with the poor orphans and other carriers with extreme cases.
Thank You all for creating out time from your busy schedules to honour this International Sickle Cell Day for 2021.
May God grant you journey mercies back safely to your various destinations.
Happy World Sickle Cell Day!