Tuesday, 8 September 2015

Sickle Cell Patients Host Media practitioners at AWka


A sample of 20 Anambra-based seasoned journalists from both the print and electronic media were today hosted by Ms Aisha Maureen Edward, the Coordinator of Association of People Living with Sickle Cell Disorder at Time Out Restaurant/Bar, Aroma , Awka. The import of the luncheon, Ms Edward disclosed, was to formally invite all the media to join her on September 12 for a Walk organised by ANAMBRA Broadcasting Service, Awka in honour of those living with sickle cell disorder. The meet was also to sensitize the media on the need to partner with her in the cause of educating and informing the public on the true nature of Sickle cell disorder and those living with it and why it is pertinent to stop the scourge once and for all.
In her speech, Ms Edward said, "The emergence of the Association(which had before now been called Sickle Cell Club) officially took place a week after  June 19, when we marked the World Sickle Day. Before then, we took close look at our register while trying to organise ourselves for the Day and we discovered that about 170 of our members have died only in ANAMBRA state in the last 3 years.
Most people don't know that I live with the challenge of Sickle Cell Disorder. But I served in the Nigerian Army with it for 14 years, travelling several countries during the peace keeping mission as an image maker of the army. The Nigerian Army gave me the best , probably because of the effort I put into my job and I know that the story is the same for my counterparts that are privileged to serve as professionals. What we sickle cell patients are deficient of in social terms, we make up for intellectually.
So, I felt that there is a need to give the same opportunity to those sickle cell patients who are not so privileged and who happen to be in the majority, that is why I started crying out.
Recently I started touring the churches because this error starts from the point of marriage which is solemnized by the church and court. And I saw that not too many of them are serious enough about the sensitization and counselling. To my greatest dismay, I realised that most of these churches don't hesitate to join couples who may not match in genotype and had been refused wedding in more strong footed churches. This bizarre practice is more rampant in new generation churches and soon I'll start calling their names and those of their leaders."
Aisha complained bitterly of how those couples, out of 'blind' love, obstinately defy nature to go ahead and join in marriage and yet when they inevitably start producing sickle cell babies, they resort to what she called 'stupid faith', subjecting these poor children to abuses in the hands of charlatans in the name of healing services. These same children, according to Ms Edward, are still victimized by their parents coupled with the fact that they have been condemned already to a life sentence of excruciatingly painful constant sickly bouts till their bodies give up finally to death.
Maureen used the forum to express her satisfaction with the ANAMBRA state government for being one of the few states of the federation to have passed a sickle cell law. She, however, revealed that for yet unconfirmed reasons, this law has been swept under the carpet since 2002 when it was promulgated. She proposed that if the government actually makes the law effective and also give the sickle cell patients a chance, they will be the best they can be and be salvaged from the tendency of being social nuisances out of frustration. In her words, 'I can categorically tell you that 80% of drug addicts in Nigeria are sickle cell patients. Some are committing suicide driven to high points of depression while others are doing everything possible to break down their parents psychologically and otherwise before they die. A sickle cell patient told me in confidence, after the World Sickle cell day, that he wished he could get a link to the suicide bombers so he could partner with them. I became shocked. I could see the level of damage the society has done to these ones who now feel that they have been condemned already."
The APLSCD coordinator was of the view that the men of God who are saddled with the responsibility of preaching against carrier marriages are lackadaisical about it because they need people to have disease conditions so that they can come for prayers, sow seed of faith expecting a miracle. "The greatest miracle", she opined, "is that of providing men with ability to detect genotypes and the consequences of wrong cross matching."
Aisha Edward also shared how she was summoned by the National Drug Law Enforcement Agency' state commandant to address the Pharmaceutical council members and how she pleaded with these pharmacists to show sickle cell patients mercy, given that the pain relief drugs they usually take are opiates, narcotics and are highly addictive. She shared that those drugs are meant to be administered to a sickle cell patient once in a long while and under severe conditions like child birth, accidents or excruciating pain. In her words, 'Instead of a pharmacist to complain to the right quarters those sickle cell patients who are requesting too much of the drugs, they see a business opportunity and continue supplying the drugs to these poor ones. The clergies too, benefit from our challenges. The NGOs are the worst monsters we have ever encountered.  They have crucified us and taken us to the slaughter house." Maureen shared how NGOs partner with lab scientists to take blood samples from unsuspecting sickle cell patients in the hospital for soliciting for international aid. "There is a case at hand now," reported Ms Maureen Edward, "of one Prof. Olu Akiyanju who has been operating Sickle Cell Foundation Nigeria for more than a decade now and have made obscene amounts of money from both national and international bodies in the name of sickle cell. Imagine that one minute of every call one makes with MTN goes to Sickle Cell Foundation, Nigeria, yet one cannot see any impact so far."
And so went on the firebrand activist sensitizing the attendees as they wined and dined.
Finally, she invited them to join in the cause of telling the society and the world the truth about what is going on with the  sickle cell scourge. She also expressed her appreciation to the wife of the governor who had risen to the call already and have assimilated 10 members of her association in the ongoing skill acquisition program. She also appreciated those media people, especially online bloggers, who have hitherto been  facilitating her cause. She then invited all and sundry to come out and support her association on that day of the Walk, September 12, at ABS complex,Awka.



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