Mrs. Aisha Maureen Edward, a sickle cell patient, recounts her experience and ordeal of her colleagues in this encounter with Special Correspondent, OKEY MADUFORO.
My time is running out and the only thing I owe my nation is bitter truth. I don’t care if anybody feels offended by my opinion. I have understood that life and death lies in God’s hands. You should stop blackmailing us with our weakness. If we really want change, the change should involve people living with Sickle Cell Disorder.”
This was the submission of Mrs. Aisha Maureen Edward, a sickle cell patient and a mother of one, when she spoke with our reporter in Awka, Anambra State, last week.
This light-skinned lady, who claimed to have served the Nigeria Army for 20 years and sustained a pelvic injury during peace-keeping operation outside the country, is the coordinator of Association of People Living with Sickle Cell Disorder (APLSCD) in the country.
Her campaign for the assistance on her fellow patients has taken her across the South East geopolitical zone and to the National Assembly.
Edward is not just a solider, but also a journalist and at some point an image-maker for the Nigerian army. She has reportedly published several newsletter about the armed forces.
Her anger grew wild when there were insinuations of some NGOs ripping off foreign donors and government under the cover of assisting sick cell patients.
She demands that the sickle cell anaemia be accorded similar emergency attention as the Ebola Virus Disease (EVD) and Bird Flu, adding that laws be passed and enforced nationwide barring intending couples who are not compatible genotype-wise from being joined in marriage.
She lamented that a total of 170 patients have died in Anambra State alone in the last three years due to lack of adequate attention, adding that three patients in the state who through the magnanimity of the governor’s wife, Mrs. Ebele Obiano, were offered employment, died as a result of what she called shock apisectomy, while the third patient died when none of his family members offered to donate blood when she had an attack.
“It is really sad when two of my members called me to give them contact to Boko Haram suicide bombers, offering themselves to be enlisted as members of the murderous group.
“They told me that there is no point living in pains, hopelessness and neglect due to their health conditions. Do you know that a patient pays minimum of N40,000 every time that he/she has crisis. In family that is of below average economically, what becomes of that patient?” she asked.
Edward further bemoaned incidences of discrimination and even stigmatisation against her colleagues.
She added: “Our members go to look for jobs and people do not take them seriously. A good example is when they have already concluded that a sick cell patient will not live long. They see it as a waste of resources to employ a patient that will die, adding that when they fall sick, productivity suffers. Therefore, most employers will not want that to take place in their establishments.
“We, the sickle cell patients who are tired of hiding our identities for fear of victimisation, who are tired of watching a most dastardly, wickedly, evil act being perpetuated and tired of being used as lab rats by ill-intentioned laboratory scientists and egotistical, self-deluded, fraudulent religious leaders, hereby, with the last blood in our veins, the last breath in our lungs, and the last strength we can summon from this living hell of a coma volitionally given to us by our parents in the name of love, raise a petition against all the non-governmental organisations claiming to exist and function in the name of sickle cell disorder and the patients, chief among them Sickle Cell Foundation, and declare that they have been causing us pains – emotional and psychological – and that they are fraudulent and impostors.
“We hereby denounce any association with these foundations and demand they be, with immediate effect, forestalled from representing us as they never were.
“We demand the thorough probe of the activities of Sickle Cell Foundation Nigeria and every other foundation having the nomenclature sickle cell attached to it.
“We, the real sufferers of sickle cell anaemia, declare these non-governmental organisations our primary enemies, as they have been the eclipse blocking the rays from well-meaning people all over the world and the government from getting to us and the cause of cessation of production of sickle cell babies – the height of man’s inhumanity to man. These foundations are the reason we still have many frustrated sickle cell patients who live a life of hiding in the shadows, pill-popping, self-pity and drug addiction.
“We demand that sickle cell anaemia be given the same status of emergency as was given to Ebola virus and bird flu and laws passed and enforced nationwide barring intending couples who are not compatible genotype-wise from being joined in marriage with immediate effect,” Edward remarked.
She however expressed hopes that the proposed visit of the president’s daughter, Zahra Buhari, who has signed on to be the brand ambassador of the Sickle Cell Aid Foundation (SCAF), to the South East would go a long way in re-awakening the consciousness of the people in the area.
