I Envy HIV/ AIDS Patients In Nigeria – Maureen Aisha Edward, A Sickler

 How is life as a sickle cell patient?
During my school days, I never knew or took it serious on what sickle cell is all about. All I knew was that I was always sick. I am always suffering from bone pain. In fact, the only sickness I can tell you I have suffered in my life is pain. I have never known how it feels to have headache. All these infectious diseases like Apolo and other airborne diseases that I know, I have never suffered any one. The sickness I have known in my life is pain, pain every time and each time I’m 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, will always be there for me. He will do anything humanly possible to ensure that I get myself out from the pains.

 My father loved me so much to the extent that the love he had for me drew envy from my siblings. Because of what I’ve read about sickle cell disease, I grew up thinking that I’m going to die any moment. While I was still a teenager, I was seen among my siblings as the weakest. We are seven in number but unfortunately we lost one. Now, we are six and I am number four. Seeing me as the weakest among my siblings was always affecting my psychological thinking as a human being. However, I thank God for the kind of parents I had. I never lacked anything as a child.  Every average sickle cell patient then will tell you that, they said that sickle cell kill at the age of sixteen and the age of eighteen and twenty but I’m still alive and kicking today at above 35 with sickle cell disorder and I appreciate God day-by-day. Living with sickle cell has given me the ample opportunity to reawaken my conscience every second – because, having this belief that you are going to drop dead any moment from now, that you reach this age. Common sense will now tell you that anything you are doing you should make sure you get it right. Don’t get anything short of right. You get extremely right. First, the mindset and your psychological state and your emotional stability are very important. Living with sickle cell disease is a challenge of emotion and psychological spirit. Now, the physical aspect of it is that, at times doctors will tell us to stay away from anything that will stress us and because the doctors have said that, you stay away from it. But in a situation you don’t have a choice, my dear you will face it. Because the best way to deal with your problem is to face it and not look for shortcuts.

 Experience has made me to understand that the best way to deal with a problem is to face the problem headlong. So, I’ve tried to live very right. Some of the things we really know that work based on the good clinical trials, is not being provided to patients even though it could have dramatic effects on their quality of life. The problem is that sickle cell disease is comparatively rare. Most clinicians don’t encounter it, and have limited experience and expertise.
Sickle cell disease is a genetic disorder primarily affecting people of African ancestry, though people of Hispanic, Mediterranean and Middle Eastern heritage may also be affected. The disease causes the body to make abnormal sickle or crescent-shaped red blood cells that can block vessels, causing organ damage and pain.
It is a debilitating and life-threatening illness. Bone marrow transplants offer the hope of a cure, but are still considered experimental. Patients have a reduced life expectancy, though they are living longer than they did in the past, experts say.
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 sickler, you have an advantage, the trauma and the shock am going to experience is capable of killing me immediately. Am telling this out of experience and don’t know about another person because human beings are different.
I have a lot of acquaintances, very interesting and wonderful ones and most of my acquaintances are male, probably because of my services in the military. Most men tend to understand you completely and instead of them to over react to certain issues, males have the tendency to keep calm and see the reason why it happened. But women will take it very serious. Am not condemning women. I love women. In fact, if there is anything I do as my daily bread, it is fighting the cause of women. I understand that we are in the society where people take women for granted. Look at the era of politics today, though is much better now than before.
I tell people to try to imagine the worst pain they’ve ever been in, from a broken limb or a migraine, and then try to multiply that and see how pain we are into.
The President, Sickle Cell Club, Enugu Chapter, Dr. Chidiebere Ikeakor died recently and you worked closely with her. What can you say about her demise?
Well, Chidiebere Ikeakor was a good friend of mine and also my leader. She is from Umunze in Orumba South L.G.A. Anambra state. Chidibere was a selfless young medical doctor, a physiotherapist but you will always see her in all nooks and cranny of all hospital looking out for sickle cell patients. Chidiebere as I know her, very amiable and calm will leave her comfort zone 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.  Chidi will use her salary, I am telling you for real to charter buses, produce
fliers and we pay for the coverage. Chidi is the one who reoriented me in the civilian way because before, I had 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. She takes those living with sickle cell to hospital with her own money. The first time I met this young lady was when I suffered AVN which suggest that my femur cap got broken and then my leg was hanged up for six weeks, that was first encounter I had with Chidiebere Ikeakor. She came and took care of me in that hospital as if I’m 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.
Do you think Government is doing enough in sickle cell issues 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 against those living with those challenges. 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.
Am appealing to the government at all levels to organize regular sensitization programme for this particular group and for the society to stop the increase in the spread of the sickle cell disorder. Those in the psychological department should organize  programmes to make this people fell they belong. It is about humanity. Even the clergymen have  roles to play in it because I knew Chidi had big dreams that we shared together before she died but I don’t believe those  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 decided not die thinking. I experienced a lot of challenges as a sickle cell patient in my family because they used to see me a fragile person. Not minding what they think about me. They equally felt threatened with my success, 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.
The Government is 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 2,000 naira while in other private hospitals, I think is 1,000 naira. Whereas those HIV patient which I can even tell you were the cause of their problem are been attended free.
Look at Ebola disease that just came into our country recently, the country ran helter skelter spending huge money to eradicate the disease. Europe is donating a lot of amenities for people living with the disease. Everybody is crying because people are scared of the disease. Now, what about the people those are not the architects of their problem like us?  We are suffering the mistakes of our parents who married as AS and AS genotypes.

What is your special appeal to Her Excellency, Chief Mrs. Ebelechukwu Obiano?
I want to use this opportunity to appeal specially to her Excellency, the first Lady of Anambra state, Chief Mrs. Ebelechukwu  Obiano (Osodieme) who has been very  dedicated and highly committed in the issues that bothers humanity. Who has gone beyond reasonable doubt to show the less privileged that she thoroughly cares about them. I want to appeal to her in the honour of late Chidiebere Ikeakor whom we lost just recently to please do something that will be a symbol or significance in the honour of our late President and for the people living with sickle cell. I also want to appeal to the federal government to bring a law that will go against anybody who fail to check his or her status before getting married.
According to WHO Nigeria has the highest prevalence of sickle cell anemia. What do you think is the cause of the increase and what do you think should be done by government and parents to reduce the increase?
Yes, the increase according to WHO is very correct. It is the responsibility of the government to fight so hard to reduce it. I’m appealing to the government to set up committees that should look at the counseling department in the schools. Let there be programmes that will sensitize people on the danger of the disease. People should also be serious with health lectures. If possible genetic lectures so that people do not make this mistake anymore. I have a situation whereby I fought the marriage of my siblings, who went ahead marrying an AS and him also is an AS, and finally they gave birth to an SS and what did I get in return. His wife said, 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.
I want government to bring out law or sanction that will go against this kind of action.  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 it 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, hence if it is something that will raise fund for the church, a clergy man told me this. So, were do we go from here? If it is a speech that is going to fetch money for the churches many will be
championing the campaign but now that is about to save life, nobody cares. Straight from my own 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. 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 Ogunlape, a medical doctor in the military who managed me very well and I think Nigerian army have the best medical facility ever seen and first management ever. The only regret I had when I resigned in the army was that I missed their medical treatment. 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 Liberties 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 Enugu Central Police Station , Mr. Ike Mba that incarcerated me for no reason with my 7 year old baby 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 but he later became surprised that hundreds of people I never met in my life thronged the station for my sake.

What about your daughter, is she a sickler?
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 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.