Guest Speaker- Miss Ify Diane Egbri. – An Educator, A Sickle Cell Warrior, An Advocate for Eradication of Sickle cell Anaemia.
On the 6th of July. 2018, The Lecture Tagged: Is your Love Compatible? Took place on our Whatsapp platform “Identity and Purpose”
These are the details of the Lecture and that of the Guest Speaker- Miss Ify Diane Egbri.
Who is Miss. Ify Diane Ebri?
Ify Diane Egbri is a 38years Old Strong and Determined Woman ; An Educator and A Sickle Cell Anaemia Advocate; She’s not defined by a diagnosis.
She’s from Delta State, A graduate from the University of Benin, Benin City Edo state, with a Bsc. in Microbiology, and a civil servant working with Delta State University Teaching Hospital, Oghara, Delta State.
She was Diagnosed with Sickle cell Anaemia disease at only 3 months, as a sickle cell warrior, she has battled this disease for 38 years and by Gods grace, she has won every battle till date.
When pains brings her down to her knees, she cries and pray about it, she nurse the pains and dust Her knees off, she gets up and keep on fighting.
She’s Beautiful and Wonderfully made, A Giver and a Children Lover, Supporter and a Woman of God.
LECTURE IN DETAILS
Love Compatibility and Sickle Cell.
Is your love compatible? Before you say say “Yes” to that beautiful proposal; Before you say “Yes” to that handsome bobo; Before you say “Yes” to that pretty sisi, Do you know your genotype?
Statistic has shown that Nigeria has the largest population of people with Sickle Cell Disease in the world, with over 150,000 babies born with this serious condition every year. Can you just imagine? Why because we lack awareness.
What is Sickle cell disease?
Sickle cell anaemia is a disease where the body produces abnormally shaped red blood cells like in the picture below 
These sickled cells block the blood vessels which causes severe excruciating indescribable pains called *Crisis*.
Sickle cell disease is date back as far as the 1870 and the children were called “Ogbanje” meaning children that come and go. So the children were labelled “cursed”, it became a “Stigma” to be SS and were generally called *Sickler* which is a derogatory word.
This disease is inherited, meaning, it is passed by genes from parents to children and it’s not contagious, stop stigmatising people with SS.
When I was in secondary school, I tried my best to keep this secret because some kids can be mean but some how a classmate saw a sick pass in my bag stating am SS and *Boom)*, that was it ohhh…I was looked at somehow with a sorry look on their faces from a distant oh, they won’t come near me..Some will even say to my face, I hear you will die before you are 21 years and Others will say, see this sickler, please go your way oh I don’t want to fight with you, after all you will die soon.
So instead of making jest or feeling unsolicited pity for people with sickle cell disease, please, show empathy and be strong for them, pray with them, laugh with them, cry with them, stand with them.
Help kick out this disease from our society today and stop bringing babies into this world to suffer.
*Genotype & It’s Appropriate Suitor:*
1. AA + AA = Excellent
2. AA + AS = Good
3. AA + SS = Fair
*4. AS + AS = Bad*
*5. AS + SS = Very Bad*
*6. SS + SS = Extremely Bad (In fact, don’t try it)…*
Please and please, avoid numbers 4, 5 and 6, so we can help kick sickle cell disease out of Nigeria.
The first step to learn about this illness is, get to know the things that commonly trigger a sickle cell crisis and how to avoid them:
A. Dehydration
An insufficient amount of water in the body (dehydration) is one of the most common causes of a sickle cell crisis. In this situation the blood becomes thicker and sickled shaped red blood cells are more likely to stick together and cause a blockage in the blood circulation.
Dehydration can be caused by:
– Sweating
– Diarrhoea or vomiting
-Frequent urination…
So take about 18 glass of water daily.
Tired of Water? Try Fruit, Tea, Soup, Milk, Juice etc…
B. Infection
Infection is the most common trigger for a sickle cell crisis. Please treat common infections such as cough, mosquito bites and infected wound on the ankle quickly to avoid chronic leg ulcer which can be very difficult to treat in people with sickle cell disease. Also improper preparation of food, poor hygiene causes infections and trigger crisis so please pay attention.
C. Not taking recommended medications and vaccinations can trigger crisis* So please, always take your recommended drugs like your Folic acid, your vitamins, and your sunday sunday medicine.
D. Avoid Extreme Weathers, Being too cold or too hot can trigger crisis.
It’s rainy season, pains can be more severe and occur more frequently in cold weathers, so it’s important to stay warm and dry. *Also please note, pneumonia is the number 1 cause of death in children with SS*, please keep them warm and anytime he/she coughs or tells you that he/she has chest pain, please tell your paediatrician to run a test for pneumonia and treat urgently.
During hot whether it is necessary to keep the body cool and well hydrated because we loose water when we sweat, so drink lots of water and any other safe fluids.
E. Not eating for long periods* can trigger a sickle cell crisis due to not having enough nutrients in the body for maintaining normal bodily functions. If fasting, please seek your doctor’s advice so you don’t put your health at risk.
F. Avoid Stress and Emotional Anxiety* Like exam stress, this one I struggled with.
I was in medical school, Uniben, I couldn’t cope anymore when I wrote my first MBBs in 300level, I had to drop out from medical school and ended up reading Microbiology because it was less stressful.
Recommended Balanced Diet include;
Calcium-rich foods such as low-fat milk, yogurt, leafy green vegetables, soymilk, Fruits like Banana is highly recommended, orange, dried fruit, ground nuts and smoothies if your child doesn’t have much of an appetite.
Avoid Unripe plantain– It contains Iron which is not good for those with sickle cell disease”.
*Self-management*
When in crisis, I find the hot water bag very useful, just place it at where you feel the pains most BUT please adults only because we can tell if it’s too hot and avoid burns unlike kids..
Also to boost my blood, I wash ugwu (pumpkin leaf) with very little water, sieve and drink, you can add salt or honey or anything that can help you drink it with ease because the aroma and taste is not pleasant ohhhh , but seriously it works like magic.
In summary
~Take folic acid & other recommended drugs daily,
~Drink plenty of water,
~Eat a balance and healthy diet,
~Avoid extreme temperatures,
~Exercise regularly, but don’t overdo it,
~Avoid taking Alcohol, it increases dehydration.
After all said, please put it at the top of your minds, Prevention is better than *Cure* but Sickle Cell disease does not have a cure, yet, it can only be managed. So in this case, *Prevention* is better than *Managing* the disease.
Thank you!
Case Study
A very good friend got to know very late in her relationship that the man she is dating is AS as her. She confided in me and I told her to *HALT* that thought of getting married to him, She said she’s trusting God, that she won’t have sickle cell babies since it’s 50 50 chance.
When two AS AS marry, there’s the possibility of having one or two sickle cell babies…
Then I asked her one question, you are very much aware of the outcome of a possible sickle cell baby, so why do you want to test God?
Also a couple is As As and they are aware, they plan on using a new technology that can tell the genotype of the foetus at about two months, then if it’s SS, the pregnancy will be aborted. How many abortions is she willing to undergo and loose her womb in the process?
Ladies and Gentlemen, please and please, do not assume, do all necessary tests before marriage to be sure of your status. This disease has broken so many homes, it’s God grace that my family is still intact, after so many trials, hospitalised like two to three times every year.
The pains can come at anytime of the day, this minute am fine and playing with other kids in the compound, the next minute am in serious excruciating pains. Most times, the pains comes at night, at about 1am – 2am waking the full house, my siblings and my parents will sit around me, crying, telling me sorry, sorry, that was all they could do, they were helpless.
One time I saw my dad crying because he couldn’t help his child, even as young as I was then, that broke my heart. My mum will always be crying and begging me, “Please my daughter, forgive us, we didn’t know anything about genotype then”. And I tell her immediately, it’s not their fault, and God can bear me witness, I have never blamed them for been SS, NEVER!!
As an adult, I learnt to encourage them also, sometimes when am down, I don’t tell my parents not even my siblings, because I have learnt how to manage myself and give them that much needed hope I know they need. In the first 14 years of my life, I suffered a great deal because my parents try to manage with some home remedy which didn’t work much but they know that after some hours, the pain will go away on it’s own without going to the hospital and that takes like crying for like 30mins to an hour or two. But when it doesn’t subside, I will be rushed to the hospital in the morning where I will be hospitalised for some days, my mum sleeps on the ground in different hospitals.
My parents and siblings shuttles home, school, office and hospital twice daily to see me. You can imagine the strain and stress it puts on the home. Sometimes sudden crisis can spoil planned events for my family, I will feel so bad, Am so grateful to God for my Dad, Mr. G.O Egbri, my mum, Dr. (Mrs.) J.N Egbri, my immediate kid sister Barr. Ufuoma Bivbere, my kid brother, Engr. Ochuko Egbri and our lasty, my baby brother, Chuka Egbri for always rallying around me, they never get tired; they bring so much joy in my life, they have been the greatest support system of my life from God almighty.
From this time, when am sick, I will go and knock on my parents door in the middle of the night, then after sometime, my younger brother learnt how to drive and he was the one taking me to the health centre because my parents were getting too old for the weekly mid-night run to the clinic where I will be treated and when the pains subsides, am taken home. In all these, my parents didn’t spare me from house chores, I was given responsibilities and treated like my other siblings, so please I urge parents or guardians to treat SS kids as normal as possible so they don’t turn out lazy or have this notion that they can’t help themselves. I remember on numerous occasions when I will be sick on a school day, my parents will take me for treatments and when I feel better, am off to school, so that I don’t use been sick as excuse not to go to school. This also made me strong, it empowered me, I had this fulfilment that sickle cell can’t keep me down.
As an adult, after crying, I wipe my tears, I stand up and I keep moving. Even in my place of work, my job was very demanding at first when I started newly, closing 5pm, 6pm, I breakdown when I get home, I go for treatments, the next day, I put on my clothes, make-up, my high heels, brush my hair stylishly and am off to work, Sickle cell has never put me down, I *REFUSED* to be put down; Who did it???? *GOD ALMIGHTY*, please help me say Thank You Jesus.
It has started taking it’s toll on my hip bones so I don’t walk well again since 2016…
But my brother and I are still here, who did it? JESUS!!!
Members Stories shared:
Linda Says
Love is really not Enough!!!!!!
My brother, Emmanual has been battling with sickle cell for the past 32yrs, the only male among 5 ladies.
I watched him all my life go through series of pains(crisis)/admission upon admissions, dropping out of school because anytime he is preparing to write a major exam to take him to the next level he falls sick due to the stress.
The monthly, yearly pains in his joints has disfigured is legs and he is not happy about it. My mum is still suffering the prize for her love for my dad , he is late now gone for good free from his mistakes but my mum is still in it.
Dear people like what Ify has said love is not enough, be double sure please before you say yes to any one. If you do the prize is a life time thing and your child might not forgive u especially if you are educated.
Mrs Becky talked on relationship issues with carriers of the Gene while she shared her story.
My name is Becky. I was aware of the gravity of my status only after I finished my high school and had to go out to search for employment in order to supplement the family income. As a young and promising girl with so much passion for dressing and passion for reading I was called (mei yanga) in Hausa and a book worm in school.
My parents both never knew their genotype and of course my dad is like that guy who hates to have test done so they had two of us.
My mum struggled to keep us alive in every way possible while my dad keeps denying the fact that he has children with special needs. All the do and don’t is only effective when mum’s eyes is on us. But once she turns the other way, we go back to flaunting the rules.
However when I applied for a job in an American company and I was asked to go for a medical test, The scale came off me. I spent three months training the computer department on how to use computers that was in the early 90s.
After three good months of the exercise and I saw I don’t like the a/c , I always go out to get my warmth, But all these while it never occurred to me that my gene was responsible.
Though I know doctors warned me to stop taking cold things but I won’t listen, I chew ice block and drink cold things. When I get my crises mum suffers. But I didn’t believe it’s the reason. I was also in the denial position as my dad.
I fight in school if I have to, I engage in sports i am asked not to… all out of ignorance.
After three months the) company said I am relieved of my duty for the simple reason that I am aneamic. I said I don’t possess any deseas hence I won’t take that, Besides I don’t even know what aneamic means for crying out loud. The ended up taking my prized job.
And I resolved that I am going to have my own company, employ people and own computers. Meanwhile I had some suitors that have eyes on me, Some stupid self acclaimed errand boys who claim to be my friends are the same person’s who go behind me and tell these guys that I am a sickler.
They make them run so much so that these guys watch me from a distance and pity themselves not me.
I went about my life like every normal kid, I applied for jobs from the vacancies in the news Paper and I always come tops in all interview, so getting a job was not difficult. I only back out once I am told I would have a medical test. I became self conscious.
I changed my friends and my environment before I got some bold suitors who came along. When I started having them I was determined that I won’t be yoked with a carrier so I am careful not to allow any relationship start until I stylishly asked for their genotype. Once I know they are carriers I turned them to great friends.. The relationship part gone. However when I have a good AA, it’s either they are flirts or chicken hearted because of the stigmatisation.
My friends asked me not to reveal myself to them but I am a believer in solid foundation. I won’t start anything on a lie!
I had a guy we got talking and became good friends. This guy just popped up the question which I already guessed would come up and I have done my subtle findings from him about his genotype, So I know he is an AS so I know it’s a no go place. I never developed any love for him but he became my very best confidant when I had to tell him we can’t be together
He asked me why.. And I told him but he refused to believe. He said I was deliberately pushing him away and I said No. We had to go to the lab together for him to believe me and being a science graduate, he made lots of researches on my gene and still insist we get married.
When I insisted No, he said he wishes to have a child like me. He said he won’t mind having a sickler as a child
I smiled and thank him for the complement but I stood my ground. He got married and related my story to his wife and I became a special friend to the family.
I had so many disappointments more because of the stigma associated with our acquired gene and the fear that we won’t last a long time. My mum was told this several, that we won’t get Past 20-21, but they fail to realise that they are not God.
Founder of Identity and Purpose (Folake Odidi and Mrs Becky on her Wedding Day- 3rd of July. 2018
Today I am 48yrs and still waxing strong and God who loves faithful servants never left them. At 48 I got married to a wonderful man who believes God is the healer of all ailments.
Please never give up on your resolve to be yoked to the right Gene. And yes today I am an entrepreneur with all I promised myself.
Why do you need to hear this Testimony?
To encourage all parents with children living with this disorder and To let you know that there is life beyond what the doctors say. God is all faithful and you as a Parent, relation, friends, you all have a part to play in eradicating this stigmatisation. LET’S FIGHT THIS TOGETHER.
Contributors
Pst Oyeluyi Olatunde, Corah Amiel, Dammy, Rhema, Oluwafolakemi, Abosede, Bukola and several other wonderful members.
Mr Adepoju says I DONT BELIEVE IT IS RIGHT TO GO AGAINST DAT LAW OF SCIENCE IF GOD DOES NOT GIVE D GO AHEAD. Also, FINALLY, I REPEAT FOR EMPHASIS THAT BOTH DISCRIMINATION AND PREJUDICE ARE TERRIBLE.
The Lecture was indeed a Great eye opener for everyone and we all got enlightened about Sickle Cell Anaemia.
Thanks for reading and God bless 
