World Sickle Cell Day: APLWSCD, CEF, Partner Government

By Mercy Hill, Alexander Johnson Adejoh and Precious Ukeje

As the world commemorates the United Nations World Sickle Cell Disorder Day, June 19, the Association of People Living with Sickle Cell Disorder, presided over by Aisha Edwards, and the Chienma Empowerment Foundation, in collaboration with the Anambra State government and religious bodies, organized sensitization programme in a bid to reduce incidents of sickle cell disorder.

This coincided with the commemoration of the International Day for the Elimination of Sexual Violence in Conflict.

The celebration in Anambra State was marked at the premises of St. Andrews Catholic Church, Adazi Nnukwu and had in attendance, people living with sickle cell disorder, government functionary, religious leaders and partnering foundations.

Highpoint of the event was the training of catechists of Catholic Churches in Anambra State on how to carry out genotype tests, and launching of the amended sickle cell law published by Fides.

Aisha Edwards, the Coordinator, Association of People Living with Sickle Cell Disorder, addressing participants at the event, said it was regrettable that parents of children affected by sickle cell disorder hid them from the public and it culminated in the children living in denial even though they died gradually.

She urged religious leaders and healthcare givers to desist from unjustly appending their signatures on certificates of couples who they knew were not fit to get married. She enjoined them to maintain the provisions of the law.

Addressing the press at the event venue, the Permanent Secretary, Anambra State Ministry of Health, Dr John Ndibe, who represented the Health Commissioner, said that sickle cell was a serious problem, and that affected people account for a large number of the population.

Noting that children born with sickle cell in the olden days, were seen and treated as Ogbanje, he said Anambra State had come up with a punitive law to help play down the problem of sickle cell, and reduce it to the nearest minimum.

Speaking on medical attempts to reconfigure the blood system, he said there was none marrow transplant which helps implant a normal blood cell into the patient’s system, but however, noted that did not wipe the entire sickle cell from the body. ‘It can only reduce the crisis experienced by the patient,’ he explained.

On the collaboration with religious organizations, he said they had started with the Catholic Church and would extend to other religious bodies as time went by.

In the same vein, the Senior Special Assistant to the Anambra State Governor on General Hospital and Technical Adviser to the Anambra Health Commissioner on Sickle Cell, Mrs Nwamaka Arinze-Okoh, said it was necessary for children to know their genotype even at a tender age, as well as learn about compatibility of different genotypes.

Explaining some of the implications of the amended sickle cell law, she said it was mandatory for intending couples to present certificates clearing them on their compatibility, adding that if anyone was found guilty of giving out in marriage or approving marriage of couples with incompatible genotypes, they would be charged to court and prosecuted accordingly.

She disclosed that the Governor in collaboration with a US based health agency, had made available, a machine which tests the genotype of a child at birth, available at the Onitsha General Hospital at the time being.

The Founder, Chiemma Empowerment Foundation, Mrs Chinwe Nnagbo, while addressing the press, said her foundation provided children living with sickle cell disorder with their routine drugs as well as went for enlightenment campaigns in rural areas, where they stressed on how to manage people living with the disorder.

She regretted that she lost her mother and twin sister to sickle cell and that many of the affected persons did not know about routine drugs, and added that they ran free genotype tests in collaboration with St. Charles Diagnostics in a bid to put a stop to sickle cell.

Nnagbo who had officially run the foundation for two years, while lauding the Anambra State government for their support towards people living with sickle cell disorder, she reiterated that it would be necessary to have children know their genotype and called on Ndi Anambra to support the course of carrying for affected people, including donation of blood.

Sharing her experience working with these people, she advocated that schools should incorporate genotype in their schemes of work.

Lending her voice, the Legal Personnel, Chiemma Empowerment Foundation, Amaka Ijeoma Alumona, while sharing her experience, said they were fighting to end sickle cell in Anambra State , and added that the amended law enacted by the legislative arm of government would help mitigate the situation.

The Catchiest,St. Paul’s Parish, Obeledu, Pius Okpala speaking to Fides on the implementation of the law, said it was possible and that it behoved on all parish leaders to make sure that it was implemented.

Meanwhile, some of the persons living with sickle cell were at the end of the event, empowered with sewing machines after being trained in fashion designing, Chikodi Chukwulobelu and Obianuju Ezeruom, told Fides that they were happy to associate with other members of the association as it made them feel at home, and charged other people who had not identifed with them to do so and own up to the challenges of life.