AS A SICKLE CELL CHILD, I WAS DAD’S MOST FAVORITE; NATIONAL COORDINATOR OF PERSONS LIVING WITH SICKLE CELL DISORDER REVEALS

ANSWER SECTION A.

1.What’s your Full Name

Aisha Maureen Edward

2. AGE

38years Old

3. Education

Studied Languages in

University of Lagos.

4. Are you Married?

Single Parent with a 10yrs Old daughter.

5. Did you consider your genetic status?

Absolutely I Did.

6. Hobbies.

Watching Detective Movies, Writing and Reading.

7. At what age were you Diagnosed of Sickle Cell?

As a toddler I mean a baby under 6 yrs.

8. Do you have another family member with SCD?

Yes one.

9.What preceded your diagnosis?

Constant bone Pain and Discomfort.

10. Do you know if your parents were aware of their

Genotype?

No they were  not at all.

11. Have you ever been transfused?  Yes. How many times? Once this year when I lost a Member of APLSCD who happens to be a Medical Consultant in Pathology. I really experienced a Severe Shock and trauma.

12. What’s your memorable Sickle cell Crisis?

That’s when I lost my Dad, I almost had a negative thought of Suicide but I later got over it through a Catholic Priest whom I may not like to mention his name.

13. How many times have you been Hospitalized?  I have lost count but severally May be because of my Hyperactive Nature.

14.Have you ever felt Stigmatized for having this Health Challenge ? Oh Yes! Severally right From Home, then School, Relationships and then Societal Attitude. Always referring to me as a living vegetable or 2nd Class human and that explains the reason why most of my members have a hidden identity except when you go for clinics in the hospital, then you will be Shocked Seeing them.

15. How do you cope with your daily life Challenge? Except my impulsive and Sensitive Nature, The best way to face any Challenges whatsoever whether daily or not,  is to take it one step at a time and face it headlong without any distractions.

16. How long have you had Avascular Necrosis of the Femur?

Seven Years now after I left my Services with the Nigerian Defence Academy and partially with 82 Division DAPR.

17. In what way is the AVN a blessing in disguise in your Relationship?  Your Guess is as good as mine. Laughing!

18. Has sickle cell affected your out look?  No I was born of a beautiful and Intelligent woman from IMO State Consequently I inherited the beauty without any kind of make up application till date. Am categorically saying that am a beautiful woman that begat another Beauty evidently in my Daughter Farida.

20. What do you think about Sicklers  getting married to themselves?  I think it’s  Outright Stupidity, Mentally Derangement which I can say that it’s Suicidal.

21. Have you ever blamed your parents over your Genotype?

No! Not at all because I remembered that regardless of my Genetic Status I was the Most Pampered and the Golden Child of the family who was usually above the Law because of my Fragility and Most importantly Daddy’s Favourite then.  But I always Challenge my Mother for always Choosing my Brothers over me,  Which I think it’s normal with every family. But after the Demise of my Daddy I quickly started feeling insecure with everyone and that Includes you too. I could trust my Dad with my Life but I currently have issues with trust ever since he died.

SECTION B

1. When was APLSCD founded and with what objectives?

APLSCD was founded and registered with CAC in 2015 with objectives to have a body where persons living with sickle cell disorder speak for themselves and fight for their rights, while helping each other. Since all members have the disorder, they can understand their plights better and will speak in unison.

What are the challenges militating against the realization of your aspirations?

The biggest challenge is that of law to protect our rights, without a law we are the left on the charity of the society. Again we need a Mobility for swift mobilization for our sensitization campaigns. Also there is the problem of fraudsters in the name of Either Caregivers or Quack Doctors using us to make so much money without considering anything for our welfare or Future Survival.

Our other challenge is our Some of our parents who care less about our wellbeing. These are the same persons that brought us into this world with this grave disorder yet when we need them we don’t see them. There are various women groups in the society but none of them have ever spoken up for our cause, they prefer pitching tents with different political parties where they get peanuts for the long hours they stand in charade under the Sun, while hiding us at Home as if we were Sentenced to life imprisonment by Them. Am Still wondering when our Politically Protesting Mothers and our Caregivers will also protest for the quick passage of Sickle Cell Law that will set us free from life imprisonment? This should be their priority in doing Justice to our  Right to Live as well as Restitution for their Ignorance during Some of their Forgery in desperation to Marry? Am Still patiently waiting!

What are your achievements so far?

*We have built a Specialist Clinic for Sickle cell in Anambra State which was sponsored by Prince Engr. Arthur Eze

*We published over 10, 000 copies a Sickle cell sensitization booklets which we circulate across schools in Anambra State

*We have paid the school fees of over 325 members

*In 2016 we were able to defray the cost of Health Care of all of our members from August to December, through the Support of Prince Engr. Arthur Eze

*We provided surgically first Aid Boxes for 150 members before MIRAL PHARM Assisted us with another set of over 80, for the remaining members

*We secured apartments for our members who are orphans or those being neglected by their family

*We provide welfare packages for our members at least 5 times in a year to augment their feeding

*We have empowered over 70 members of the Association to start up their own businesses, Please Check our website Aplscd.Org for your Curious verifications.

How is APLSCD funded?

Our funding is usually from the Board of Directors, Church and other well meaning Individuals in the Society. But especially the churches who will make it a strong responsibility to care for their faithful living with sickle cell disorder.

You once stated in an interview that you were envious of people with HIV/AIDS in Nigeria? Why? Do you think the state and federal governments in Nigeria are according SCD the attention it deserves?

Obviously I am, these people brought this sickness on themselves either consciously or not. They never inherited it and weren’t born with it, yet they receive the best attention from government. Their drugs are free and budget is allocated them. They have regular free checkups. But in our case, we inherited this disorder, it was not our making, we are born with it and no attention is paid to us. Our drugs are very costly and we take them from birth. The government neglects us, and so do not allocate any budget to our cause. Even during empowerments we are seen as walking dead. The Government and Most Churches has department for HIV but very Shocking and Surprisingly none for Sickle Cell. I Guarantee you that not even one Church has a genotype testing Machine close to their marriage counseling Rooms.

What would you like to see happen to SCD research in the next 25 years?

I wish they can come up with a drug to cure this disorder and end the pain for good. Also the drug will be cheap or even free just like HIV drugs are, not the kind of treatment and transplant for the rich only.

SECTION D

As far as SCD advocacy is concerned, you have an aversion to folks without SCD turning themselves into Spokespersons for the disorder. Why?

I don’t really have an aversion per se, as long as the person actually has a sincere concern for our cause. My problem is that most people who have shown interest in the cause without suffering from it, often end up using it to their financial gains, but if You have the disorder, you know the pain, and will fight with your last blood because whatever you do also affects you. Unlike those who are out there for the financial gains.

You may be a Hero to the SCD community in Anambra State, but outside the community, many would see you as a troublemaker and rabble-rouser… what do you have to say to this?

Laughs, i will tell you most sincerely from my heart “WHEN INJUSTICE BECOMES A LAW TO SCD PERSONS REBELLION BECOMES MY DUTY” I actually think the reverse is the case. I have received more accolades from outside than Anambra State you perceive I should be a hero. Anyway prophets are not valued in their land. Most persons won’t like me in Anambra because they feel I have ended long chains of fraud, where they have ripped sickle cell persons off. And they want me out so that the fraudulent business may thrive. But we have solidified and my members are wiser now.

You are known to be a harsh critic of the Sickle Cell Foundation Nigeria (SCFN) founded by Haematology professor Olu Akinyanju. What exactly are SCFN’s ‘sins’? *** Pls be specific as we intend to get the organization’s response.

Olu Akiyanju claims to run a sickle cell Foundation, but unlike other reputable NGOs, his activities are solely in Lagos and Abuja for Fund Raising Mostly During World Sickle Cell Day, even when he has the wherewithal to extend to other parts of the country judging with the partnership he claimed he had with multi Choice and MTN whose Outlet is in every nook and Cranny in Nigeria but He has never done a single thing in the other geopolitical Zone especially the South East where Some people who claimed to work with his Foundation was fingered in a couple of Fraud that traumatized my members and their parents, How then is it a sickle cell foundation, who are they actually helping? Some of my late Members have reached out to the foundation on several occasions and they got nothing, but we hear on broadcast stations of how much they have received from different bodies and individuals. Where then are these monies going to if they can’t help people it is meant for. Why not MTN,  MULTICHOICE, SILVERBIRD AND THOSE AIRLINES consider my people for job opportunities rather than hypnotized them with Self pity and also use them for both emotional and Financial Scam with the Giant Cooperate Bodies? Will it be a Crime if SCFN bearing Nigerian Embodiment in Nomenclature opens up 36 branches across the States Since their partner presence is All over the Country?

Our Association is barely 2 years old but we have extended our outreach to other states. Last year we hosted the World sickle cell day in Anambra and this year we are doing it in Enugu.This year also we partnered Franklin Onwubiko for a sickle cell advocacy in Katsina State. Later this year we shall be Partnering with Jennifer Okorie Foundation for another sickle cell advocacy in Ebonyi State. And we are extending to other states as well. That’s how it is supposed to be. But after how many years in existence, what can the Olu Akiyanju and his sickle cell foundation show for it? Look the More I remember the Grave damage done to us by our most trusted Caregivers in Medical Field the More I  have a total nervous Breakdown which could make me lose my Mind anytime. But I believe that someday God will grant APLSCD Justice if not now, then  someday. Because any injustice done to any man must be addressed  by man if not now then by God  later. No Regrets Whatsoever!

How have you been able to extract funds for APLSCD in the suspicious murky waters of SCD administration in Anambra State?

Like I mentioned earlier most funds come from the Church and well meaning Individuals.  We still write to the Government, but the usual bottle necks have left us with nothing except for the 1million naira we received in 2016. However, the wife of the Governor has been a strong benefactor of the Association and has shown her financial and moral support most of the times we call on her.

What is the Anambra Sickle Cell Law all about and how do you intend to get it accepted by other states in Nigeria?

The Law protects the right of a sickle cell person in the state, even goes to the extent of protecting that of an unborn child from getting sickle cell. It implies that church is mandated by the LAW not to wed genetically incompatible couples, and if the law is flouted in this regard there is a penalty.

It also provides for a budget for persons living with sickle cell in the state.

It also provides for a compulsory genetic education in schools, so that people will know their genotype and its implications while growing up.

The law also requires for a person’s genotype to be on his or her ID card, not just the blood group as is usually the case.

The law binds on clergy, schools, government, and society in general.

When that of Anambra State is done we hope to extend to other states using the success of Anambra State as a case study or sample while presenting our case. However, the National Assembly are making giant strides to pass the bill at the National level through our dear Senators Like Ekweremadu, Andy Ubah, Gbenga Ashafat, Senator Stella Odua, and Sen. Ogbuoji.