IS THAT REALLY YOUR TRUE GENOTYPE??

  Hi guys I'm back again but this time with a different story.
 On this faithful day, I went for my wound dressing all dressed up with my makeup and lipstick looking on fleek.I was so happy because I was going with the intention of getting there and hearing Bimpe your wound has healed there's nothing to dress you can go home and I was prepared to start singing and dancing with my one and a half leg😂😂😂😂 (I don't have one and a half leg o, I was made whole and perfect by my Father and so i am) but that wasn't ‘the’ case, the previous dressing was opened only to seeanother pop out that was going to break out again. And the usual opening up with blade and pressing to bring out the pus and poking to make sure the ‘wound is as clean as it should be’ all this with no analgesic. I came back home crying because that wasn't my expectations.
 At that point i was in so much pain and at the hospital only for me to receive a DM via Instagram from someone who's name I cannot mention for so many reasons the text said and I quote. “Hi Miss, I hope it isn't too late to do this? I have been watching you closely and I know you are committed to the SCAF Crusade.( SCAF is Sickle Cell Aid Foundation. And i am a member. To know more about the foundation kindle drop a comment and I'll get back to you)  I need to talk to you though. I need you to help talk to a cousin whose child is HBSS And I am afraid he's thinking of something desperate. Please leave your phone number here. I will holla. Cheers”
 I received this text 4:30am Tuesday morning I was currently in pain and exhausted and I wasn't
emotionally prepared to talk to someone like this but I replied giving him my phone number to send me a WhatsApp message. I was too exhausted to be angry. I woke up to a call from the person who sent me the message, I was calm already by this time so I asked him to give his cousin my number and he should call me even though deep inside me I knew that I had no clue of what to say or do to him but I knew I couldn't use harsh words on him because he was in a bad place already doing that would only hurt him more and then he probably would have hurt the child, so I prayed that God should put the right words in my mouth and after talking to him I could understand him and immediately I knew how he felt and I could relate because it was the same feeling I felt when I saw a 2 year old HBSS patient in pains and she wasn't even related to me so I could imagine how it felt watching his 1 year and only 6 months old son suffer a crisis pain. Anyone would want it to end we are all humans and it's hard for us to watch those we love suffer. I was able to talk him out of taking a drastic decision and enlighten him on managing a child with sickle cell anemia and he listened.
    We became more like friends. I made sure I checked up on him to see how he was doing and also how the son was doing because it wasn’t about the boy alone but him too. He must be in the right state of mind to manage the child.
  Talking to him more made me realize how much work needs to be done on the awareness of sickle cell anemia because he had no clue on how to manage a child with the SS genotype. Knowing your genotype is one but knowing your correct genotype is another. Yes, your correct genotype. This man is a victim of a wrong genotype result. He isn't the first to be a victim and I know so because I have seen many others who are victims of wrong genotype result. For example, a mutual friend who needed to do some medical tests including genotype test for an application was also given a wrong genotype result. She knew her genotype to be AS only for her to get her results and genotype result turned out to be SS and she was scared and confused and it was totally understandable because she has always known her genotype to be AS and now she got a new result saying her genotype was SS and she started to think about all the times she felt weak or sick and felt that was her true genotype she became a shadow of her former self until a new genotype test was done. Lo and behold the result turned out to be AS. She suffered traumatically until the new result said she was really AS.
     Mistakes such as this has ruined many homes, marriages and even caused severe emotional trauma for several people.
    Genotype testing is important and should be done multiple times in a reputable laboratory.
PLEASE AND PLEASE KNOW YOUR TRUE GENOTYPE BEFORE MAKING LIFE
COMMITMENTS. So, others do not have to suffer. #knowyourtruegenotype #breakthesicklecycle

#saynotowronggenotyperesults.

   Yours truly,

  Bimpe Shenbo.

TALKING ABOUT BREAKING PEOPLE UP

“would you rather choose LOVE over your child or children’s healthy life without limitations
or would you choose for your child a life of pain, anguish and limitations’’

My heart suddenly stopped beating, I only feel this sudden cold envelop me and then I feel wet at
my chest region and suddenly on my face. I took out my hand to clean my face and to discover
what exactly is on my face and where it came from, it's from my eyes and tears were rolling out
beyond my control "Tolu you're in charge of your body, you’re in control" I told myself and so
then I tried to gain control of myself. I placed my hands on my heart and I could now feel my heart
beating fast, faster and faster and faster it goes. I could feel this strange pain, deep down
somewhere in my heart, emotional pain. All this happened at the sight of a 2 YEAR OLD HBSS
PATIENT whom I encountered struggling in pain while I walked through the hallway of the
hospital. For a moment I stared at her and it felt I was staring into a mirror, I could feel the pain
she was going through, I could relate, I could feel everything she felt and it hurts, it caused me
even more pain because she was only two (2 years old) and she was already suffering so much. A
whole lot of questions began to stare up in my head; questions concerning survival, peer
relationships, emotions, and life generally. All this thoughts in my head put me in a state I have
never been before. I felt ANGER mixed with SADNESS and a little bit of CONFUSION, in fact I was
LIVID to top it all I felt like I failed.
My mixed emotions; a 2 year old is suffering so much pain way older than she is, a 2 years old
who is being deprived of some activities within her age group, An innocent 2 years old struggling
and fighting to survive. A 2 years old whose life path of continuous war keeps graduating from
stage to stage has been chosen for her without her consent. An innocent 2 years old facing the
consequence of an offense she knew nothing of nor ever participated in, all this pushed me to
approach the parents who were complaining about bills and how tired they were.
 I could understand what they were saying but then I was filled with rage, if they are this tired
of supporting the fighter on the field waging the war against an army of enemies obtained because
of their failure, how tired would or should the child be?! .I decided to ask them one important
question everyone ought to answer; WHAT IS YOUR GENOTYPE? Their reply required me to ask
another question, DID YOU KNOW YOU WERE NOT COMPATIBLE AND THE CONSEQUENCES
OF GENOTYPE INCOMPATIBILITY?? Then again, their reply startled me, now I had reached my
rage climax "WE DIDN'T KNOW IT WOULD BE LIKE THIS.....WE THOUGHT OUR LOVE WAS
STRONG ENOUGH TO OVERCOME" so they said. "LOVE" mere love is very essential but never
enough. Most people love one another but they forget they are going to love others who would be
products of them and this makes them so ignorant of how much those offspring can suffer as a
result of such great ignorance. I just couldn't help laughing in this weird manner as I kept
repeating the word "LOVE”. Suddenly a question popped into my head and I finally asked "HOW
FAR AS THIS LOVE HELPED IN OVERCOMING HER PAINS?" Your 2 years old child is in there
lying in pains, unable to say how tired she is and just to think of the fact that it’s just the beginning
of her war. She is already being introduced to an addictive injection called PENTAZOCINE.
A dosage of pentazocine contains 30mg and at 2 years old the child is given 15mg to help with the
pain, by the time she's 5, 15mg of pentazocine might not subdue her pains anymore and the
dosage would then be increased to 30mg. At age 10 she might be an addict already or be
introduced to a higher dose or higher pain killers like MORPHINE. What’s "LOVE” doing while
she's going all through this? A lot is bound to happen to that child except she is well educated on
her genotype and how not to abuse drugs in desperate need of relief and she also has to learn to
persevere in very hard time even though it's very difficult. Although perseverance is difficult but
it's the best option in this situation we have found ourselves.
    Don’t get me wrong, love is important, I believe in love and love is God and God is love, it’s an
amazing feeling and it brings life, happiness and joy. Love has brought me this far, stopped me
from doing unthinkable things and has made me persevere, the love that by my family, friends, doctors and nurses, strangers who have become friends and friends that
have become family. This is what I have held on to and it has helped me greatly, I find love
everywhere and even when I try so hard to push them away, they come closer and hold me tighter.
Love is life but in a situation, such as this one love is letting go of that person and finding someone
who is a match and be proud that you chose to give your child or children a healthy life and
freedom to do anything they want without health restrictions and not with regret and shame that
you chose to give your child a life of anguish and pain with lots of limitations.
   We sickle cell patients had no control over our medical condition but we can have control over
how we tolerate this situation we find ourselves and we can also fight against it in others as we
fight against it in ourselves and that's why creating awareness for its prevention is a life goal for
me. HBSS patients are taught most times by ourselves to be compulsory warriors and to be tough,
fearless, brave and to fight and keep fighting no matter how hard the battle may get. Some HBSS
patient would rather be addicted than wallow or groin in pains than fight, this is very
understandable and it's not weakness because not everyone can withstand fighting an enemy
showcased to be strong and always getting stronger and stronger and more experienced than
oneself.
 I am Adebimpe Shenbote, I am 20 years old and the highest doze of pentazocine I have taken
is 60mg.This is not because I have got a different kind of pain nor a milder one but rather because
I choose to FIGHT. It’s because of my zeal to fight and my desire to overcome, it’s my will power
and orientation that has gotten me this far without being an addict. Looking back, I recall after
my 7th surgery (ooh yes, Seven (7) you read it right not mistaken (for my Yoruba people) Meje)
In a year my pains had become too much for me to bear and so I was introduced to MORPHINE
(of course the morphine I talked about earlier, yes ooh I've tasted it and it's not sweet ).That was
one of the worst days of my life ,it's the worst day of my life because whatever it did BRUH No
doubt took the pain away but the effect was crazy, it's just like collecting fish from the devil and
paying back with a pound of flesh. I felt the bed flying and rolling over at the same time and I
closed my eyes so tight but the feeling was still there and I couldn't sleep no matter how hard I
tried. It took the pain away but brought its own kind of discomfort which was still a different pain
in disguise. After that experience there is no way I'll want to be in such position again. I'll rather
watch a chair flying in the movies than experience such crazy hallucinations beyond my control,
so then, no matter how much pain I felt, I'll hide it so I would not be administered morphine even
times the pain felt like a bell ringing in my head, I'll endure so badly and lie I wasn't going through
no pain and times when the pain defeats me and so I cannot hide it I'll beg for pentazocine instead.
You know the thing about fighting always is that you might be defeated sometimes but the ability
to get up and develop new formations to fight again and again makes a great fighter and as such
a survivor.
I have got one question for everyone reading this, DOYOU KNOW YOUR GENOTYPE? Why allow
yourself and someone you'll love so dearly go through everlasting pain when it can be avoided .I
have taken it upon myself to create awareness because I would certainly not want any more
innocent children to go through such pain physically, mentally and emotionally. Let’s all join
hands in building a chain against HBSS. Love shouldn't be an excuse for someone else to suffer
pain. Love doesn't have to bring such pain. SAY NO TO SICKLE CELL, disband when not
compatible, remember prevention is better than cure. Lets #breakthesicklecycle.

Yours truly,

  Bimpe Shenbo.

Matching up my genotype

MATCHING UP MY GENOTYPE

My best friend and I often discuss love. Finding the right man, having the right feelings…Typical
ladies discussions. We would joke and reprimand one another for being too choosy and we will
say things like, “Hurry up dear, sha hurry up”. It sank into my subconscious and nagged at me.
Was I being pushy? Have I been too choosy? I would often go over my past relationships and
wonder if I had passed up on one too many proposals. It was eating into my happiness and
eventually I had to stop myself. I sat down and had a long chat with myself. What went wrong
with all of those relationships? Asides the common incompatibility issues, I came up with the
conclusion that I had a smaller pool to fish through (Claim not supported by statistics).
See, I have met a lot of great guys and I have fallen in love a couple of times but let me step out
of my selfish zone for a minute and think of the many friends, acquaintances, wives, husbands,
daughters, sons and loved ones who have suffered at great lengths and have passed away or the
many who are in pain and in fear of more to come. Getting closer to the end with every fight. I
think of the great love my parents had for each other but how that, unfortunately, could not keep
them together to the end.
Sustaining humanity demands a little more from us than mating and breeding. It demands careful
planning and commitment. My heart breaks every time I have to watch my Niece rushed into the
emergency room. From as little as a year old, I would watch her bones go limp and see her roll
about in pain. What killed me was the look of confusion in her eyes. I imagined she wonders why
she can’t get her legs to support her anymore and would often look to us, her protectors, for help
and we were helpless. I remember sitting with her in the hospital one night, I placed her in my
laps, rocked back and forth and just cried along with her. I couldn’t make the pain go away but I
could feel the pain with her.
Moving back into my selfish zone, I decided long ago that I couldn’t do that to my child. I couldn’t
bear the thought that I could have saved her from living this life but of selfish reasons, I decided
to let her through it. I remember years before we found out I had the Sickle Cell, I would have a
run around with my friends at a birthday party, wake up in the night with terrible pains in my leg,
report to my mother and how she would have lots of theories thiplain silly. She would attribute the pains to having had too much sweets and having insisted on
wearing heels (Quite funny, I had a heel-wearing fetish as a little girl).
1 tablet of Panadol would turn to 2, she would call for her trusted “Robb” and give my leg a quick
rub down (Pun intended). She would wrap me up like a burrito and satisfied, she would leave me
to sleep it off. I would lay in my bed quietly, tears streaming down my face and I would distract
my mind off the pain as best as I could, telling myself I shouldn’t have had that slice of cake. I
became quite good at hiding the pain but I can tell you it manifested in my mental health. I would
yell at my siblings, I began to hate myself and I was convinced I was a defective human being.
In Secondary school, I was introduced to sports and I fell in love with it. I was not great at any but
I would stay late in the gym after school and run around shooting hoops. I would feel my legs
burning up if I exerted myself but I loved it too much to care and eventually I stopped having so
much pains. I would later come to find out my genotype when I got admission into the University
and when I found out, I was not shocked, No! I was relived. I was happy to know I was not
exaggerating the pains nor imagining them. I had been abusive to drugs because I would sneak
into my mom’s drug storage and sometimes swallow as many as 6 tablets of Panadol in a
desperate search for some pain relief.
I read up about Genotype matching and I made a promise I would not make that terrible mistake
of a genotype mismatch. I come up as weird to guys when on the first date I ask questions like
“what is your genotype?” It surprises me that in this age and time, a lot of people still reply with,
“I don’t know” or “Those things don’t matter to me”. I don’t fault them for it but I firmly let them
know it does matter to me. My Mother still has difficulties accepting that her kids (My older sister
and I) have the Sickle cell and God forbids you even mention it.
I tell anyone willing to listen that I have the Sickle cell so sometimes, when I would request you
accompany me to the Hospital in the middle of the night and you wouldn’t badger me with
questions while I was trying to keep my mind off the throbbing pains. I would prefer my spouse
made the choice to take me as I am, Caveat and all, and I most certainly would prefer if my kids
didn’t harbor the thoughts that I caused them a life of agony. #knowyourgenotype #breakthesicklecycle

    Written By
  Adetoro Tokunbo.

Dear Readers,

I would like to apologize for my inconsistency with the blog. It has been due to my ill health and unavoidable personal issues.
I am hoping to be more consistent here by sharing articles on sickle cell as well as other health care issues often.
Thank you for sticking around with me😊
Let's #breakthesicklecycle

Yours Truly,
Bimpe Shenbo.

My AVN (Avascular necrosis) Experience

Avascular necrosis is the death of bone tissue due to lack of blood supply. It can lead to tiny breaks in bone and the bones eventually collapse.

Avascular necrosis is a common complication among HBSS patients. Quite a no of sickle cell patients have also undergone hip arthroplasty (partial or complete hip replacement surgery).
  About a week before I developed AVN sometime mid-December 2014, I had recently gained admission into University of Lagos through a diploma program. Registration was on-going and I decided to meet up with some friends on my way out when I fell with my butt on the floor. I didn't feel any pain so I got up and met up with my friends as I had planned earlier.

A week after my fall I had prepared to travel for my grandmother’s remembrance. I woke up that day with an unwelcome familiar ache in my hip. At first I thought I slept in a wrong position but later realized it was crisis pain so I took a tablet of cataflam (a painkiller) and we went on our journey as planned. On getting there I started to limp because the pain had gotten worse so I took another tablet of Cataflam. I was asleep in the car for the most part of our journey back to Lagos because I was exhausted and in pains.
By the time we got home, I started to limp more so I took more pain killers and refused to go to the hospital because it was christmas period and I didn't want to spend Christmas at the hospital.
Pain got worse day by day and walking became practically impossible. When I couldn’t take the pain anymore I decided to go to the hospital and had to be carried around by my brother.

I was treated at the hospital for Vaso occlusive crisis (VOC) however the hip pain persisted while I was no longer feeling other joint pain. I spent the new year in the hospital while my hip pain got worse. Series of x-ray were done but revealed nothing until an orthopaedic surgeon was invited to review me. He diagnosed AVN and said I would need to do a surgery which would take 6 months recovery time. In the meantime, I would be on painkillers and use crutches for ambulation.
We were advised to have the surgery done outside the country precisely U.K. We eventually opted for India because of the delay we experienced getting a U.K visa. I had the surgery done in India as planned and returned back few weeks later.

Unfortunately, there was an infection and the incision site kept breaking out. The implant used at India was eventually removed because of the infection, a wash out surgery was done and the implant was replaced with an antibiotic spacer.
I had a total of 7 surgeries in 2016 and I have one more to go this year. I still walk with my crutches. Over the past couple of months, I have formed an unbreakable bond with my family and three friends who have stood by me. I have met amazing doctors, surgeons, nurses and other people who have inspired me through this journey. I have also had friends who have become mere acquaintances but God has helped me through it all.

By his grace, I know I’ll conquer AVN and infections and walk again because I am a warrior and I’ll keep fighting till I’m a victor.

Yours truly,
Bimpe Shenbo.

Life of a sickle cell warrior

LIVING WITH THE SICKLE CELL

You know that feeling when you get in the pool and let yourself sink to the bottom? That calm that engulfs you as you feel yourself growing heavier and going deeper. That serenity, is it worth the pain?
A few years ago on a Wednesday, I took my usual route to the pool. It had been a long day and the thoughts of the pool was all that kept me going. The first drop into the water is always a new feeling, it never gets old. I did my usual laps around and had my moments of sinking to the bottom and straining my lungs. I exceeded my daily 1 hour routine and 2 hours later, it was dark and I could feel myself shiver but I was not ready to come back up yet. An argument later, I reasoned with myself and decided I had had enough for the day. I felt lighter, healthier and ready to face the next day…or so I thought.
I woke up at midnight to an unwelcomed but familiar ache in my left leg. I swallowed 2 tablets of Diclofenac and slept with a dread in my tummy. I was right to feel that dread. I woke up some hours later rolling around in terrible pains all concentrated in my left leg. The leg was practically throbbing with unexplainable pain. I laid in bed staring at my watch and gritting my teeth while I did my mantra, “On a scale of 1-10, it is a 6. On a scale of 1-10, it is a 7”.
My sister, a then Medical student, had thought me this chant. She would ask me to rate the pain as honestly as I could on a scale of 1-10, 10 being the extreme. According to her, this would help monitor the pain and distract my brain a bit. It works, I think. At the hospital, I would often address my discomfort using this scale and every doctor I have met has appreciated it. My little Pool rendezvous earned me over 3 weeks on admission in the hospital.
Have I been back to swimming since then you’d ask. The answer is yes. Yes, I have been to the pool many a times after that incident. You see, the Doctors did ask me to reduce the hours spent in the water and give consideration to extreme temperatures. However, what they did not tell me was to stop being spontaneous or adventurous. I do only have a period till my next crisis but I will not spend that period in caution and in fear.
Where others push their limits, I push along with them with a different limit of mental and physical condition. I have learnt to read the signals my body sends when it wants to take a break. I have learnt to appreciate the subtle dull ache in my limbs that tells me to take a load off. I have come to appreciate the various paces at which I take my life, most times on the slow lane but it makes me appreciate the few times I hit the fast lane. I am living with the sickle cell but we have learnt to co-exist like a married couple. We are each other’s weaknesses and strengths.

Written by ,
 Adetoto Tokunbo.

Maternal mortality