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Ibi Ayeni: Bringing Awareness to Sickle Cell Disease

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“Hey, did you know (insert person’s name or gender here) is a sickler?”

How many times have we heard that conversation about someone we know or knew? Yeah, it seems to be a recurring experience that is common in a society like ours. I have always wondered who started it and when the term “sickler” was coined – though I do not remember specifically the first time I heard that term, but as far back as I can remember, I knew there was a negative connotation to it. If you were a “sickler” you were a walking “death” sentence. Everyone had sympathy for your family – not even you the “sickler” but the parents for having such an unfortunate “child-tuation”.

I did not quite understood what it meant to be a sickler; I had never known anyone in particular who was one. I found out years later after learning I had Sickle Cell Anemia, a variation of Sickle Cell Disease (SCD).

Even though we may not realize it, “sickler” is a negative, derogatory and condescending term that we MUST stop using – it does more harm than good for our society. We have sickle cell warriors not able to come out to friends and others about their struggle with sickle cell due to lack of compassion from society. Following experiencing the worst pain imaginable, my new doctor explained to us that what I was experiencing was a pain crisis episode. I, at the age of 13 first thought to myself after; “I’m a sickler”? How? Why? No!!??! OMG nobody can know!

Imagine at that age, to be consumed by being stigmatized forever and isolated from people; my friends oh my goodness, what will they think of me? Would they still want to be my friends? My church members cannot know either, they will want to have deliverance session because I have the “sickler” demon, my life is OVER.

Yup! That was literally my thought process.So I went my whole life without talking to people about my chronic illness. Finding out you have sickle cell is one thing, identifying with being a “sickler” was another. Fortunately what I understood to be a “sickler” never quite described me or any of the other people I later met who also deal with Sickle Cell. I call them warriors – they fight fiercely every single day to live as normal as possible while dealing with the disease – funny how I had known about the term even before knowing anything about the disease; and I’m sure that’s not peculiar to just me.

Sickle Cell Disease (SCD) is such a complex genetic disease that I am quite sure there are still people out there, educated even, who truly do not understand what it means to call someone a “sickler”. Sickle Cell Disease is far more complex and the term “sickler” does not begin to describe the first discovered genetic blood disorder. Sickle Cell Disease affects the hemoglobin on red blood cells, which is responsible for carrying oxygen into the cells, tissues and organs. This causes the red blood cells to sickle or form a “C” shape, thereby inhibiting the ability of the red blood cells to transport through the veins to deliver oxygen to the body.
I find this word to be a wedge between those living with the disease and everyone else, it has hindered the connection to proper understand the struggle caused by the disease. It is a disconnect from things like SCD’s genetics components, its exhibition, its forms, heck the different types of the disease… oh, wait, don’t tell me you don’t know there are different variations of Sickle Cell Disease or that the percentage of sickled cells in the body differs from person to person.

I do not know how many times I have heard “but you don’t look it”, the reality is life experiences, struggles and pain do not show on our faces, and this is especially true for me and may warriors. Like many people dealing with this or another form of chronic illness, I have missed school for weeks, had schoolwork sent to me at the hospital and would go back to school like nothing happened, that was my routine. I have gone about my life with Sickle Cell Disease setbacks here and there, but from a young age I felt like every other kid you knew. I lived a normal life because my family early on determined to make me feel as normal as other children I knew and met. I went off to University – matter of fact I wanted to go as far as possible away from home but it just so happened I ended up an hour away from home, but I very independent.

While in college, I traveled a lot; mostly by driving mainly because I was a broke student but also one that loved to drive. I was a little daredevil and was up for anything as long as it was legal. I later graduated with my Bachelors, and went off to live and work in the city, but throughout I can count how many people knew about my Sickle Cell struggles, and I was perfectly fine with that until September 2014 when I became really involved in raising awareness for SCD.

September is SCD awareness month in the United States. I have always supported and spoke about Sickle Cell Disease but never shared my connection with it. A lot of people thought it was an interest of mine or that I knew people who suffered from the disease. This time though was much different because I went a step further – a step that birthed the public announcement of my blog about Sickle Cell.
Since then, I have made it my mission to bring awareness and education to the public, to pursue federal policies that support the effort to reduce the cases of Sickle Cell and promotes the health of SCD warriors – in addition to offering mentorship to young Sickle Cell warriors who strive daily to live a full life while living with a debilitating disease like as Sickle Cell.

The core focus of my movement is to focus on the part of our population with Sickle Cell Trait, commonly known as “AS” genotype; they make up about 20-30% of Nigeria’s population. This makes it imperative to combat Sickle Cell Disease in Nigeria. We have the highest cases of Sickle Cell in the world and somehow the disease gets insignificant awareness and attention from our government and the general public.

My hope is that my “you don’t look it” face brings the much needed attention to Sickle Cell. There is no reason why in 2015 we continue to have high numbers of babies with Sickle Cell Disease. We have to close the gap between the general population, the disease and the SCD population – SCD trait is inclusive because we have people who either do not know their genotype or are not educated enough to understand the impact their genotype have on their future.
In the spirit of celebrating World Sickle Cell Day, I encourage you to join the movement to bring a much needed awareness and education to Sickle Cell.
Happy WSCD!

My Mission: Raise awareness and education that contributes to the efforts to deplete cases of Sickle Cell Diseases here and beyond, in addition to advocating for patients and families of SCD warriors worldwide.You can find me on social media on Twitter and Instagram and on My Blog

39 Comments

  1. Amy

    June 19, 2015 at 10:04 am

    I recently conducted a study on AA individuals who are willing to marry SS individuals. My ears hurt so much by the time I was done. I could not believe the answers I got. I am probably not like them because I have SS relatives who live more fun lives than I ever will. In any case,I love what you are doing and am going to offer a prayer for you.

    • iamnotmyscd

      June 19, 2015 at 10:09 pm

      Yeaaaaa ?? I’ve heard some of those ridiculous answers too, lol, their loss yo! Tehehe. But on a serious note, I think it all boils down to this education and awareness something. Most of these people say what they say because they know no better and most likely have not met these fierce warriors ?? (tooting warriors horn all day, err day) .

      With more education and awareness, I think some will come around. I live a pretty normal life like many warriors.

  2. D

    June 19, 2015 at 10:11 am

    Thalassemia trait is also very important to test for, it is just like being AS and has the same consequences. So be aware. Unfortunately we have been poorly educated about the different variation of sickle cell disease in Nigeria which can have far reaching consequences

    • iamnotmyscd

      June 19, 2015 at 10:04 pm

      It’s all under the same umbrella, Sickle Cell Disease, I gotchu covered ?. I agree, our society is lacking in the education dept but with you and I, that can be changed.

  3. JustAgirl

    June 19, 2015 at 10:27 am

    Well done Ibi Ayeni. Only those who suffers from this ailment or have family members with it, will truly understand.

    • iamnotmyscd

      June 19, 2015 at 10:01 pm

      Very true. Unfathomable comes to mind.

  4. ajike

    June 19, 2015 at 11:49 am

    ibi you are so right, when i tell people i am sickle cell they start with this eyah tone and sorry like am going to die instantly, i got so tired of this that i hardly got connected with people and when am missing from school i tell people its malaria, it so sad but it makes me stronger and able to fight harder because of their thoughts.

    • iamnotmyscd

      June 19, 2015 at 9:59 pm

      That’s the spirit! Turn that negative to positive, let it encourage and build you up! You have no reason to be ashamed, you are more than enough just how God created you.
      (Hugs)
      Let’s connect ☺

  5. elle

    June 19, 2015 at 12:24 pm

    I’m a 34yrs female sickle cell warrior too nd it has totally been by God’s grace living with it in nigeria. @Amy I can really understand what u mean when u said ur ear hurts with d survey u conducted couldn’t find any willing AA to marry. Until heaven sent me a wonderful AS man who belived so much in me dat insisted to marry me oooo. We got married dis Jan and will be conducting a PND test whenever we are pregnant to know d genotype of d baby b4 birth. That is my story but despite all odds I’m still standing tall!!

    • Warrior Mum

      June 19, 2015 at 3:23 pm

      Kudos Sis! I also have SCD, gonna be 37 this year. Been married 8 years now and I have 2 kids who thank God are AS .
      Nothing beats watching your kids having a healthy normal life. Growing up was pretty tough and though I still have crisis, I am able to manage it better now since i know my common triggers.

    • iamnotmyscd

      June 19, 2015 at 9:53 pm

      Identifying triggers are super helpful, it may not always ware the pain and trauma but at least it’s still good

    • iamnotmyscd

      June 19, 2015 at 9:57 pm

      Aww! Congrats sis! God will perfect all that concerns you. I love to see people thrive but most especially warriors, if not for anything, for proving the naysayers wrong! God bless you.

      With love.

  6. Berry Dakara

    June 19, 2015 at 1:30 pm

    Thanks for sharing Ibbey!

    Honestly, I have to say that I was a little in the dark about sickle cell while growing up. I knew “sicklers” but didn’t really understand what the big deal was about having the disease. So much so that when my best friend told me he broke up with his AS girlfriend (he was also AS), I accused him of getting in the way of love. But as I’ve gotten older and seen friends and family deal with it, I’m a little wiser.

    Two thumbs up to you!

    • iamnotmyscd

      June 19, 2015 at 9:29 pm

      I love you A! Thanks boo for being the awesome you ???.

  7. goodiebagman

    June 19, 2015 at 2:13 pm

    It is well with you elle

  8. titolu

    June 19, 2015 at 2:18 pm

    [email protected] Elle #hugs#. It’s well with you.
    I’m quite close to a number of warriors and m’ always inspired and amazed at their inner strength, despite the odds..
    And I love that new title ”Warrior”. That’s what you guyz really are……much love.

  9. zeezee

    June 19, 2015 at 2:52 pm

    I wonder how come we do not perform routine sickle cell anemia screening at birth in Nigeria. It is cheap, and Nigeria is said to be the bedrock of the disease globally, with up to a quarter of us having the trait. All mothers that give birth in government hospitals supposedly have their sicckle cell genotype- can’t their children be screened immediately after birth? Just because early diagnosis and management is a form of prevention in itself.

    • iamnotmyscd

      June 19, 2015 at 9:31 pm

      THIS! We need to demand the federal republic to step up and do what needs to be done.

    • sola

      June 20, 2015 at 12:24 pm

      I’m AS and had to end a 5 year relationship because my fiancee was AS too. The mistake came from my part because my parents claimed they were both AA only to find out one of them is not (after 30yrs of marriage)!! And my ex told me he was AS before the relationship stated. I want to suggest that government mandates every couple that wants to get married in Nigeria, do genotype compatibility test before they get married (yes, it’s possible) and also genotype tests for children immediately they are born. Stay strong ibi and keep up the good work

  10. Oluwabusayomi

    June 19, 2015 at 4:23 pm

    God bless you Ibi Ayeni and all other warriors like me. I will be 35 this year. I’m also a University graduate in Nigeria without a job since I finished NYSC in 2009. It saddens my heart seeing anybody having a kid below 5yrs living with SCD in this age due to *love*, ignorance or faith. Note: I’m a xtian and faith woman but why put God to test bcos of their own selfishness. This is a disorder I don’t even pray for my life. Pls,we need more media awareness and govt help for total free medical care and job for our graduates. On marriage: d prospective in-laws shlds see d warrior as their own kid. Bcos u’re warrior doesn’t mean u will die tomorrow while as AA doesn’t mean u won’t die today. I got married in 2009 and I’m blessed with a 4yr old girl but I lost my husby (AA) in 2012 to Typhoid in UCH. To anybody out there interested in any warrior should have a better understand of what d disorder is all about. God bless.

    • AyaLekan

      June 19, 2015 at 7:22 pm

      Ohhh my! Your story saddens my heart. I pray that the Lord will keep you and your daughter. There is a serious need for sickle cell disease awareness in Nigeria!

    • iamnotmyscd

      June 19, 2015 at 9:33 pm

      Everything you said sis! I look up to other warriors like you, and thanks for sharing with us your experience. Sincere condolences to the demise of your husband. Please let’s connect if possible.

      With love.

  11. iyaeti

    June 19, 2015 at 7:39 pm

    I am a scientist and gladly I can boldly say that I never looked down on sickle cell diseased individuals. Nonetheless, I felt very sorry for them during a crisis. My first nephew’s mother is a warrior and lives like it’s golden, which I admire about her.

    Unfortunately, we are not aware of this chronic disease. I’ve heard many parents, even mine say “I am AA as well as your father. No one is sick in our family!” However, I found out few years ago that my sister carries the trait! When my parents asked, they simple answered, “it’s not me!” Where did it come from?

    I do not blame them at all, but lack of education regarding the disease. For all I know, it’s not their fault. They were never educated about this disease. But for us, we’ve learned to be more aware!

    As stated by many, it’s unreasonable to marry or have children with diseased partner because of love or faith.

    Please be aware! If you have the disease, and your partner has it too, please count your losses now and end it than dealing with generational lifelong pain! Being in pain and crisis is not fair to you! Do not continue it with your offspring!

    May God bless and keep all warriors in good health and sound mind!

    • iamnotmyscd

      June 19, 2015 at 9:37 pm

      Amen! From your mouth/heart/keyboard to God’s hear.

      You nailed the matter right where appropriate… EDUCATION! I don’t beef our parents generation, but you’ll be surprised how many young people have zero clue! Just watch the battabox

    • iamnotmyscd

      June 19, 2015 at 9:39 pm

      (Sorry submitted comment before finishing…)

      the battabox video about genotype… I was scarred, it’s sad. But yea, more education and awareness abeg!

  12. Concerned

    June 19, 2015 at 7:44 pm

    So what happens if PNDs from carrier couples are SS? Do they terminate the pregnancy? What if it happens repeatedly? That’s a tough call….Life can be challenging but may God help us to rise above it all

    • iamnotmyscd

      June 19, 2015 at 9:42 pm

      This is why one should have as many information as you can, and in the world of technology today, there is bare excuse of not having knowledge. There are genetic counselors, endless resources, etc.
      God help us really.

  13. CHELSEA

    June 19, 2015 at 8:22 pm

    Do not accuse people of being ignorant even if educated. My dear this is how the world rolls. You care for things that directly affects you. Someone in my family was diagnosed of SCLERODERMA, I am sure most people have not heard of it, and I will not blame them for their ignorance, you care for what affects you. Good luck and God’s grace.

    • iamnotmyscd

      June 19, 2015 at 9:49 pm

      Totally. But in a country such as Nigeria, with the HIGHEST case of sickle cell in not just Africa but the world. You can’t compare both in that aspect. I can guarantee you every Nigerian know/heard about SCD, and that’s not to downplay scleroderma or any other disease at all, but not just that, with malaria being a prevalence issue sickle cell disease is right in all that mix. So yea you can pick and choose but when there is 20-30% of the population carrying the gene alone is more than enough reason to give attention to the matter.

  14. Nonamespls

    June 19, 2015 at 9:34 pm

    SCD has taken away a lot from me, happy to see warriors still standing i have quite a number of cousins with the sickle cell and from an early age experienced the pain they had to go through and the loss too but we still have standing warriors the eldest is 52 still going strong, another turned 40 this year and has two lovely kids. Please we should phase sickle cell out

    • iamnotmyscd

      June 20, 2015 at 1:54 pm

      Awesome testimonies! ?? … #breakthesicklecycle

  15. Sharon

    June 20, 2015 at 3:04 am

    Good job Tayo. I am glad you are bringing awareness to this illness, I pray we find a cure soon. See you soon at July convention. Love you!

  16. Theodora

    June 20, 2015 at 6:59 am

    Well done, Ibbey!! Ever since you invited me to join your cause, I have followed it closely because it is right at my door step!

    I grew up watching my dad’s sis battle with SCD and it hurt to watch her have a crisis. She finally got her miracle in her 30s and today she’s AA and married with two kids without the sickle gene. Glory be. During my time in NYSC, I remember staying with my friend at the ER and praying for her life. I remember being rushed to the ER myself because I battle with anemia (I am AS) that can sometimes get so severe, I develop angina.

    It is appalling the level of ignorance and lack of concern that trails SCD. It is killing too much of our populace and yet we stay stigmatizing its warriors. Sigh…

    I’m always here to lend my voice and whatever I have.

    Again, well done Ibbey!

    • iamnotmyscd

      June 20, 2015 at 1:52 pm

      I love you endlessly Dora! Aww, and thanks for your continuous encouragement, I appreciate friends like you in ways I cannot begin to tell, it is that deep. Love you babe

  17. oluwabusayomi

    June 24, 2015 at 10:58 pm

    @ Ibi & Aya Lekan- thanks so much for your love.
    @ Ibi- you can connect with me on: [email protected]

    • Ibi Ayeni

      June 26, 2015 at 5:47 am

      Please check your email

  18. Anonymous

    July 11, 2015 at 2:16 am

    myself and my hubby knew we were both carriers but decided to go the pre genetic diagnosis IVF route and decided to take some yrs off before having babies especially since we both stil had age on our sides. As ‘luck’ would have it,I got pregnant contrary to our plans.We decided to believe God for a positive outcome and not check since we believed abortion wasn’t in agreement to Gods will.my child turned out to have the SCD and has had quite a no of crises at a very young age and I can assure you it’s the worst thing any parent has to experience. I think I cry like everyday now sometimes just from the tot of it all.We are currently at the stage of finding a donor for a bone marrow transplant .Would I take the risk again?i honestly don’t think so.but from where I stand now,I believe God would glorify himself through my child’s life and the transplant would be a success all round,My child is definitely a warrior even at such a tender age but I just wish things were different..

  19. Oluwabusayomi

    October 21, 2015 at 12:02 pm

    Hello Ibby and long time. Have not heard from u……………. My mail- [email protected],pls let’s connect and talk.

  20. Ayobami

    June 11, 2016 at 6:54 pm

    Nice one siz! Keep it up! Following your lead already.

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