Sickle cell patients have been discriminated in Nigeria and that is why I envy HIV/AIDS patients-----Aisha Maureen Edward

President Sickle Cell club of Nigeria, Enugu Chapter, Dr. Chidiebere Ikeakor died after crisis and suspected chest infection.  And that was indeed a blow to the entire sickle cell club in Nigeria and Miss Maureen Aishatu Edward addressed a press conference.


The sickle-cell disorder (SCD) or Sickle-Cell Anaemia (SCA) which is often called drepanocytosis is a hereditary blood disorder characterized by abnormality in the oxygen carrying haemoglobin molecules in the red blood cells.
At crisis situation and complication periods, people around the patient will almost lose hope but like a cat with nine lives, they most times survive the crisis and come out stronger but not without severe pains.
 Beyond this frail look, is a super intelligent quotient and mentally strong and Psychologically sensitive. The fear of death at every minute of the day is managed through better health care management and regular clinical check up and transplant and transfusion at worst scenario.
Over 300,000 children were born with a form of sickle cell per year in Sub-Saharahan Africa and other countries in South- Asia and West Indies.

In this crucial challenge, Maureen had two wonderful children but would not want to talk about them even when she recently have phobia for relationship detests. She informs that the biggest threat to sickle cell patients is infection whatever type hence sexual relationship of any type scares her once infection comes to her mind. 

And that is why I ask you if you have ever seen a Sickle Cell Patient being stronger than the normal person-running around even engaging with the military and engaging in media consultancy?   Any injustice she perceives against the poor, the down trodden or fellow sickle cell patients, she fights like a tiger but when it concerns her nobody comes or so it appears. If you call her a civil Rights Activist , she would answer as she associates with Comrade Ibuchukwu Ezike, the Executive Director Civil Liberty Organization.

That is the life of Miss Maureen Aishatu Edward,  a moral crusader and founder of a non-government organization, Centre for moral mentorship. But some people might have known her with the name Maureen Chima before now. Aisha was a roving reporter for the Nigerian Army Magazines---SOJA (AHQ) and Valiant (NDA), Stallion (1Div), Dragon (82 Div) , Watchdog (NACMP)  and resigned on health grounds.

Aisha Edward who is also a Director in Schofield media Consult , a consultancy firm in Anambra spoke exclusively to odogwuemekaodogwu.com shortly after a press conference to announce the death of their president goes memeory lane of her exploits in the military as a writer, her teaching days  as well as her capacity in fighting crime, crusading for moral and ethical re-orientation in the society .

Excerpts:

And Maureen tells you about her life as a sickle cell patient?

During my school days, I never knew or took it serious on what the sickle cell is all about. All I knew is that I was always sick. I am always suffering from bone pain crisis. In fact, the only sickness I can tell you I have suffered in my life is pain. I have never had any headache as well as air born diseases neither do I know what it is feels like.

All this infection infections like Apolo and other air born diseases that I know, I have never suffered any one. The sickness I have known is my life is pain, pain every time and each time am in pain, there is this high tension in my family. There will be serious chaos and panic. My father, may his soul rest in peace, and my senior brother Joe whom I loved so much until now ,will always be there for me. He will do anything humanly possible to ensure that I got myself out from the pain. My father loves me so much to the extent that the love he had for me attracted envy from my siblings. Because of this I read about sickle cell diseases and grow up thinking that I was going to die any moment.

In fact, every average patient then will tell you that, they said that sickle cell kills at the age of sixteen and the age of eighteen and twenty and here I have lived above 35 and still counting. I appreciate God day-by-day for giving me the ample opportunity to reawaken my conscience every seconds. Having this believe that you are going to drop dead any moment from now, you insist on getting anything you are into right.

Living with sickle cell disease is a challenge of emotion and psychological spirit hence the first task I gave myself is to get my psychological and emotional stability intact despite the warning from doctors over stress. But in a situation you don’t have a choice, my dear you will face stress and I have been in stress all my life from the classroom to the Nigerian Army to my NGO and Media consultancy.

I don’t keep many friends. I have a couple of colleagues who has been very supportive and who gives me the sense of belonging. I am so weak in terms of social life of friendship and I don’t keep people exceptional because, once I take you very close to my heart and in the next minute, you do something unwarranted or you do something very undermining my nature as a human being because am a sickle cell patient, you have an advantage, the trauma and  the shock am going to experience is capable of killing me immediately.

I have a lot of acquaintances, very interesting and wonderful ones and most of my acquaintance are male, probably because of my services in the military. If not for this challenge you would have heard about my NGO fighting the cause of women more than I do now. I understand that we are in the society were people take women for granted. Look at the era of politics today, women are at receiving end but thank God it is getting better.

I give glory to God and thanked these Military officers who assisted in saving my life like General G.T. Okulate, consultant who helped me regain my self esteem, General Mommoh, Col. Hussaini and Col. Bassey that managed me. I was in pains from a broken AVM and coupled with my health challenge , that was the worst pain I have ever been in. When I left army it was a difficult time for me to regain all that I enjoyed in the military. Without these four gentle men, my life would have been cut short and I am so much indebted to them.

I am grateful to Comrade Ibuchukwu Ezike, the Executive Director Civil Liberty Organization, Mr Elechi Elechi from Ebonyi state, Sen Ogbuoji, Chief Mrs Ifeoma Nwobodo former Chief of staff in Enugu state and of course Chief Obi Okoli and Anali Chude, Anambra state commissioner for Justice for fighting for my freedom from the DPO of Central police station , Mr Ike Mba that incarcerated me for no reason with my 7 years baby being probably for feeling threatened that a civilian is having tabs on all criminal activities in Enugu even before it happens and nip them in the bud without checking my background  and my health challenge became surprised that hundreds of people I never met in my life thronged the station for my case.

President Sickle Cell club Enugu Chapter, Dr. Chidiebere Ikeakor died recently amidst controversy? What do you know about that?

Well, Chidiebere Ikeakor was a good friend of mine and also my leader. She is native of Umunze in Orumba South L.G.A. Anambra state. She was born by a renowned dietician who served at the University of Nigerian Teaching Hospital Enugu. Chidibere was a selfless young medical doctor, a physiotherapist but you will always see him in all nooks and cranny of all hospital looking out for all sickle cell patients.

Chidiebere as I know her, very amiable and calm will leave her comfort for another person to feel relaxed. She was the one who made me to start going to schools, churches to sensitize people on the essence of eradicating sickle cell in our society. Mind you, sickle cell is been caused by a cross match of genotype AS to AS or SS to SS. Once you do not take to the advice of the professionals, the medical doctors you will run into the doom of having the sickle cell child. Now, Chidi will use her salary, I am telling you for real to charter buses, produce fliers and would pay for the coverage. Chidi is the one who re-oriented me in the civilian way because  before, I have this military way of doing things by force and then sending my message and that is all but Chidi will always bring me back. She will calm me down. He appeals to those who necessarily don’t matter just to make sure you understand her message.

She takes those living with sickle cell to hospital with her own money. The first time I met this young lady was when I broke my AVN , that is my femur cap and then my leg was hanged up for six weeks, that was my first encounter with Chidiebere Ikeakor. She came and took care of me in that hospital as if I am her own sister.

The demise of Dr. Chidiebere Ikeakor is indeed a blow to the entire sickle cell club in Nigeria and not only to the nation but particularly Ndi Anambra and Umunze community in particular.

Do you think Government is helping the matter and what is your advice to those Chidiebere left as their president?

Well, unfortunately am no longer in Enugu. While I was in Enugu I tried my best and sometimes it will result into confrontation, out of anger because you will see people’s reaction and the way they discriminate with those living with those challenges. At times you will even feel like eliminating them. They have made me feel marginalized, and discriminated that I resort to confrontation and if you win me fine and if I win you good.

I am appealing to the government at all levels to organize a sensitization programme for this particular group and for the society to stop the increase of this sickle cell.

Those in the psychological department should organize a programme to make this people have a sense of belonging. It is about humanity. Even the clergy men have a role to play in providing genotype cross matching machine in their marriage counseling offices in it because I knew Chidi had big dreams that we share together before she died but I don’t believe those our dreams has been cut short. The clergy men should start sensitizing people and organizing seminars on the need for people to avoid being married with the negative genotype. AA to AS and AA to AA rather than AS to AS.

Like I told you earlier, people used to see me as weak person and I am what I am today because I made up my mind one day and decide not give it a thought. I experienced a lot of challenges as a sickle cell patient in my family because they used to see me a fragile person as a child but now they equally felt threatened with my success story as an adult despite that they pity me.

Those who saw me as the weakest at home now saw me as the most favoured and most powerful and the next thing they did was to ensure I was broken down psychologically and emotionally, so that I will be subdued and if possible die and leave all that I have for  them.

Governments are not helping us at all. In fact I envy HIV patients following the kind of free treatment and attention they receive from government today. In UNTH Enugu, before you see ‘a doctor, be you a sickle cell patient, you must pay the sum of 2,00 naira while in other private hospitals, I think is 1,000 naira. Whereas those HIV patients who are mostly the architects of their problems are been celebrated attended free of charge. But sickle cell patients even when it is not their fault at all are discriminated and abused rather than their parents who wrongly matched in marriage. I blame the Church and clergymen for that because had it been they took charge of the things they were not supposed to be talking about such would not be obtainable but their interests are always money and donation to the extent that I went to a Church in Enugu to preach the message of sickle cell but I was not given attention and encouraged me to look for people to donate money to them….

Look at Ebola disease that just came into our country recently, everybody from the President is running helter scatter, spending huge money to eradicate the disease. God brought a plague called Ebola to punish Nigerians and Africans for neglecting Sickle cell patients and for not signing the sickle cell Bill in the senate for years now and Chidiebere in forefront fought for its passage on behalf of the club died without actualizing her ambition. Who will push for the bill for the sickle cell patients now? 

Special appeal to Her Excellence Chief Mrs. Eberechukwu Obiano

I want to use this opportunity to appeal specially to her Excellency the first Lady of Anambra state Chief Mrs. Eberechukwu  Obiano (Osodieme) for her dedication and commitment in the issues that bothers humanity. I want to appeal to her in the honour of late Chidiebere Ikeakor to please do something that will be significant in the honour of our late President and for the people living with sickle cell. I also want appeal to the federal government to bring a law that will go against anybody who fails to check his or her status before getting married.

According to WHO, Nigeria has the highest prevalence of sickle cell anemia in the world………(cuts short)?     

Yes, the increase according to WHO is very correct. It is the responsibility of the government to fight so hard to reduce it and I am appealing to the government to set out a national committee to set up a strong counseling department in all states of the federation to liaise with various churches to intercede during  marriage even though the new trend among boys and girls who indulge in aimless sex is a challenge.

Counseling, sensitization on the dangers of the ailment should be on the limelight,, so that people would not make this makes anymore. I have a situation were by I fought a marriage of my siblings, who went ahead marrying an AS while he is also an AS, and finally they gave birth to an SS and what did I get in return. His wife said, it  is because I did not want her to come into the family that’s why they got SS child. So, the families are the major problem of this challenge.

As for me, it is sinful for AS to marry AS and I don’t forgive such people when I come across them. I do not spare them at all because I don’t like it. I know what I am passing through naturally. Nobody will want his/her son or daughter to marry a sickle cell disorder, except the person is very rich.

We are not being sincere at all and that is our problem here in Nigeria. I have seen a clergy man who told me that is God who gives a wife or a husband, even children. I told this clergy man, see let us come to a biological reasoning, just give out an opportunity, let us talk and sensitize people, so that they know the right step to follow. He said okay, if it is something that will raise fund for the church, a clergy man told me this. So, where do we go from here? If it is a speech that is going to fetch money for the church a lot of church will be championing the campaign but now that it is about to save life, nobody cares. Straight from my heart, any person that discriminates purposely, the sickle cell patient should be jailed without any fine.

Some government should map out a way and then go to churches and schools provide them with testing machines and ensure the health workers did the same thing they are doing now on the cause of Ebola to sensitize people on how not to be a victim. Before now I have no self esteem. The only person who made me to believe in myself in  the military is one General Ezeoke, a medical doctor in the military who managed me very well and I think Nigerian army have the best medical facility and medical management in the country. The only regret I had when I resigned in the army was that I missed their medical treatment. 

What about your child. Is she a sickle cell victim?

No! I couldn’t have made that mistake. My daughter is AS and I don’t look forward in making such a miserable mistake in my life. Be it adopted child or biologically, I will not in my right thinking sense be a victim of such.

Your advice and word of encouragement for our youths and those living with the sickle cell who are not yet married?

Now, my advice is that the long time happiness is better than the short time happiness. It is good to fall in love but when you do with this man or woman, you will live together open your eyes to avoid permanent regrets. This is because if your first child becomes a sickler, that love turns into hatred in no time and that child will always be sick. If  the child is the type that is having shortage of blood every time there is problem , is it you that will be donating the blood or your husband? Or will you people keep the child at the risk of blood bank donor, whereby you don’t know the medical history of the blood donor. Then family politics will come in. Am advising the young’s ones who are not yet married to first check their genotype before they get married. Before you fall in love go and check your genotype. Then if that your genotype is corresponding, you can now think of falling in love. You don’t drive a car that has no fuel.