ADDRESS PRESENTED BY NATIONAL COORDINATOR OF APLSCD ON THE WORLD SICKLE CELL DAY AWARENESS AT MADONNA CATHOLIC CHURCH

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AN ADDRESS PRESENTED BY THE NATIONAL COORDINATOR OF APLSCD ON THE WORLD SICKLE CELL DAY AWARENESS HOLDING AT MADONNA CATHOLIC CHURCH AGULU ON 19TH JUNE 2022.

PROTOCOLS:

It is with deep sense of purpose that I stand before you today to welcome you to our annual commemoration of the United Nations world sickle cell day awareness. I show gratitude to God for his loving kindness and wondrous mercies which has kept us alive to this day. I thank you all for finding out time from your respective busy schedule to honour this invitation with your presence, and to others who couldn’t join us physically in this event but have us in mind and spirit. Today marks another turning point in our resolve to eradicate sickle cell disease totally, using veritable mediums to harness our collective strength in the acts of sickle cell sensitization and genotype education.

The theme for this year’s celebration, “Harnessing Media Strength to Promote Effective Sickle Cell Awarenesses ” aptly captures the significance of the resolution met by the UN General Assembly in December 22 2008, where sickle cell disease was recognized as a major public health concern and one of the world’s foremost genetic disease, which only a targeted and aggressive approach on sensitization and awareness would help to redress. Today we have in our midst some distinguished ladies and gentlemen who has excelled tremendously in the media practice, raising their voice against official corruption and passive ignorance that has constituted a stumbling block in the drive against zero tolerance of sickle cell births.

I would delve no further without intimating you about the achievements of the Association of People Living with Sickle Cell Disease, as it matters on the healthcare and economic development of its members, particularly the orphaned and indigent children who continue to brace complications with the little vigour that is left. When we began many years back, our mission was to give hope to the hopeless, to fight for the weak hearted, to become a beacon in the turbulence of uncertainties, to hold   government officials responsible in keeping their oath of office. All these we have painstakingly achieved through our developmental partners which includes  Churches, Schools, Health institutions, Town Union Associations, Women and Youth groups, Civil rights groups and the Media. On our watch and in a legislative process which the Association actively championed, the Anambra State Sickle Cell Disease (Control and Eradication) Law 2019 took life. From there we pressurized those in the health ministry responsible for creating the sickle cell monitoring committee, a bureaucratic organ within the ministry that would be saddled with formulating operational policies and framework needed to sustain the onslaught against sickle  disease. Unfortunately, our hopes and aspirations were dashed to pieces by the immediate past commissioner for health who felt obligated to pursue his own selfish gains against the mandate of the law.

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In the economic sphere, the Association has been quite proactive and responsive to the plights of persons living with sickle cell disease. This has been translated into viable economic plans with the creation of skill acquisition centers at Nanka and Agulu, for indigent members constrained with the upheavals of fending for themselves. Skills like fashion designing, catering, computer operations, barbing, etc are all products of our skill acquisition centers. Those within school age and with a high alert for academic values are enrolled in schools and their results are very encouraging. We also financially empower other members of the Association periodically, to encourage them and remind that all hope is not lost.

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Medically, the Association regards the health of its members as top priority. Sickle cell crisis is always a dangerous episode for every carrier, therefore our existing relationship with prominent health institutions is sine qua non to maintain a formidable healthcare response. Nnamdi Azikiwe University Teaching Hospital Nnewi, is leading the frontiers of this medical campaign. Our monthly medical interactive session with the foremost citadel has proven beyond doubt that health is wealth. It affords every patient the opportunity to confide reassuringly with the caregivers on best management practices. Aside bolstering their confidence in orthodox medicine, the program also exploits the possibility of investigative healthcare in order to reveal any invasive ailments like renal disease.

Our commitment to social welfare for impoverished and orphaned sickle cell children has led us to establish the first sickle cell orphanage home in Nigeria. With presently 16 sickle cell children living and educating comfortably in the dormitory named after HE Peter Obi because of his benevolence in ensuring that the orphans are well accommodated, the Association had succeeded in leaving an indelible footprints in the sands of time. We continue to solicit for your support to enable us meet up with our set goals in the sickle cell home.

As we beckon on media personalities and their respective organizations to assist us in spreading the message of genotype education and premarital screening, let us pause a moment and reflect on how powerful our collective resources can change the face of sickle cell sensitization. From the print media, to the electronic media, and down to the new media, the gospel of sensitization remains the same; “ Get your genotype certificate,  Ensure genotype compatibility,  Stop the discrimination and stigmatization

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of sickle cell persons, Help sickle cell persons where necessary.”

We couldn’t have achieved all these without the moral and financial inputs of the following  groups and individuals-  Awka Catholic Diocese, Ekwulobia Catholic Diocese, Aguata Anglican Diocese, Diocese on the Niger, NAUTH Nnewi, Agulu People’s Union, H.E Peter Obi, Hon. Johnbosco Onunkwo, High Chief Ikenna Okafor (Ide Akwaeze) High Chief Azubuike Ekweozor (Ide Umuawulu),  Sir. Paul Chukwuma, Hon Chief Ferdinand Dozie Nwankwo 

( Onyendozi) Prof Chinyere Stella Okunna, Mr. Uche Amalumazi, Chief Onyeka Nnoli, Chief Hycent Ubboh, UPAD Agulu, Hon Sir Oliver Afamefuna, Rev Fr Dr Joel Okechukwu,( APLSCD Catholic Diocesan Chaplain Awka Diocese) Rev. Fr. Dr. Cosmos Ebebe (Director), Ven. Dr Kamtoo Obi, (Aguata Anglican Diocese Chaplain) Hon.Jideofor Chikelue, Chief Primus Odili, Chief Emmanuel Ibeneme, Hon.Sir Ernest Ezeajughi, Sir. Ikenna Iloabuchi, Free Merci, Knight of St. John of God , Mr Yusuf (DSS), Mrs Chinyere Ezeofor, Diocese of Aguata Women, Old Girls of HRC Enugu, Guild, NUJ Anambra State Chapter, Authority FM, Kpakpando FM, ABS, Ogene FM. 

We hope and pray for the consistency of your support in order to win this war against sickle  disease.

Thank you all for honoring this august occasion and may God grant us safe journeys back to our various destination

Aisha Edwards Maduagwu

National Coordinator

APLSCD and Director,

Sickle Cell Orphanage and Underprivileged Home Agulu.

07014152622.

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