Friday, July 1, 2011

World Sickle Cell Awareness

“World Sickle Cell Awareness”

Whenever I hear that, I usually just think of annoyingly large groups of people, walking long distances with less than average musical bands playing horrible renditions of what should be good music, wearing ugly red tee-shirts with some slogan or the other about living with sickle cell, and some noisy unpleasant old woman being a very serious nuisance with the help of a very loud speakerphone.

World Sickle Cell Day was last month, and I’m not particularly sure if it was a simple coincidence, or an act of God, but I became very aware of the sickle cell disorder in that same month as well. My girlfriend’s little brother happens to live with this disorder, and he had a breakdown. Through the years, I’ve heard about people having breakdowns, but I’ve never quite grasped the severity of it. How in the time of crises the dance with pain is hard and exhausting, and quite often, may be hijacked by Death. I never quite understood what it felt like to know that someone who mattered to you was in a pain so severe, and yet you could do nothing to stop it. All you would be able to do is try to help make them as comfortable as possible, and wait. And pray that when Death should try to cut in on their dance, they would politely decline.

For the 72 hours in which his crisis lasted, I began to understand. I saw the tortured expression on his face and the contorted form his small frame would take as he was racked through with pain. I winced as I watched his sister try to be strong even though what this little guy was going through was hurting her almost as much as it hurt him, because she knew that was what she needed to be for the both of them. I held her when she couldn’t be strong on her own anymore, and crumpled from the pressure that fear and frustration bring at those times because her brother was in so much pain, and she couldn’t make him feel better. I felt myself choke at some points when I wanted to say how everything would be fine and he would be okay, because even as optimistic as I attempt to be sometimes, I just didn’t know. And then when he was finally better again, I felt the relief wash over all of us; and I heard myself tell Death, “Not today dude…not today.”

Sickle Cell awareness has taken on a new meaning for me. It’s not particularly about the press, the media campaigns, the noisy awareness walks, concerts and talk shows. It’s not about the people walking about wearing those tee-shirts and wristbands, proud to be associated with some charitable movement. It’s about the people who live with this disorder. It’s about the fact that once in a while, some more regular than others, they fight battles that the rest of us may never have to comprehend or contend with. It’s about the fact that some win these battles, and then come out to tell the rest of us “We’re still here. Help us if you can, but love us all the same. ‘Cos we’re not going anywhere.” It’s about the families that stand by them, no matter what, crisis or no crisis. They hold their hands and help them stay strong. They bear the pain and the fear and the pressure, because that’s the way it’s meant to be.

As you may have guessed, I’m new on this blog. But, I do plan to be here for a little while. I’m the Capoeira Panda. You may call me Panda. What’s most important though, is that I’m Sickle Cell Aware.

Are you?

Tuesday, June 15, 2010

A message from one of our partnered charities about WORLD SICKLE CELL DAY

in celebration of the World Sickle Day,Sickle Cell Advocacy & Management Initiative
Please Join Us for an

Awareness Walk

Walk for Change: Be Sickle Smart
Take off Point: National Stadium End Point: NIMR Hall, Edmund Close, Yaba
Take off time: 8.00am

FOR YOUR BRANDED TSHIRTS and/or CAPS TEXT 0809 800 7264 WITH YOUR NAME NOS & SIZE. Cost: T Shirts 3000, Cap 200 ( this is limited in qty)

and a


In Celebration of the World Sickle cell Awareness Day
Under the distinguished chairmanship of Dr Jide Idris, the Lagos State Honourable Commissioner of Health
Date Saturday 19th June, 2010.
Venue : NIMR Hall, Nigerian institute of medical research, Edmund Street, behind Presbyterian Church, Yaba, Lagos.
Time: 12noon.

Free Genotype Testing Available
Refreshment follows

Join us in creating more awareness on Sickle Cell Disorder. Its a walk for change. Come in your Jeans and Tshirt.

Tuesday, May 25, 2010

Monday, May 24, 2010

JEANS FOR GENES 2... still more pictures

Moyo of IMAGINE CLOTHING with some of the models wearing her designs for the show!

Toni Payne, Designer, with cross section of models with her designs for the show

Toyin, Charles, Zara, Toni, Buki

Emem and Kunle Bello

Eva gets shown some love!

mODE nINE, one of the performers speaking about THESE GENES

Ada, Zaeynab, Ebere and Abiola! All Rocking THESE GENES and these smiles!



Jibola Olubiyi and Bolu

happy Facez!

Cross Section of the designs!

Tuesday, April 20, 2010

Jeans for Genes in more Pictures

Model working the runway in a Polo by OUCH!
(not seen in this picture, but she is wearing sandals by T.T. Dalk Accessories)

Mo Cheddah lenu at Jeans for Genes! Guess she still can't be censored!

Gbemi Olateru-Olagbegi, Tosin Oni, Maynezee, and more faces at the event

Models at the event


POPE na enjoyment!

Media presence at the event

mODEL models Toni Payne

tUNde Aladese models a Happy Facez teeshirt as Baby of Happy Facez explains the teeshirt design!

the Amazing DIPP being interviewed on the Red Carpet

At the exhibition stand!

Tosyn Bucknor and Kunle Bello


Monday, April 19, 2010

Jeans for Genes in Pictures!

Kunle Snatcha Rooftop (what a mouthful) registers for Jeans for Genes!

Zara the Flyest!

Tosyn Bucknor( These Genes), Kunle Bello and Emem Ema (the M.Cs)

More Accessories, including BUCKSTONE Flip-Flops on display!

Accessories by My Dazzle on display

Toyin Adesola of S.A.M.I.

Kunle (Snatcha of the Rooftop MCs, Ohimai and Mode Nine at the event)

They call him Willy Bang!


SKALES heads for a grammy at Jeans for Genes 2

FEX at Jeans for Genes 2


Tuesday, April 6, 2010

Jeans for Genes, the Morning After!

well... maybe several morning afters!
Sorry for the radio silence, but dont worry, we are not planning to pack this blog up and pretend sickle cell never happen

Even though this blog was utilised effectively for the dissemination of information about Jeans for Genes, it was primarily set up to give constant information about sickle cell in general, and one persons journey with sickle cell in particular!

We will have news items for you from time to time, plus interesting fictional and non-fictional posts so please check our blog as often as you can
Heres an idea... Why not subscribe?
yes boss!

So Jeans for Genes 2 finally held after all the pre-show publicity and hype!
It held at Swe and yes, it started right on time (3pm) with the Red Carpet and Market
We had cameras from MTV covering the initial proceedings for our event exhibitor, YAT, i.e, Youth Are Talking. Youth Are Talking focuses on HIV /AIDS awareness
We also had initial backstage craziness, and networking!
That was fun!

The show started proper at about five with a runway mash-up (a mix of tees from various designers, including the YAT and THESE GENES tees!)
And then, music, fashion, music, fashion, music, fashion....

Our thank-yous come soon, and of course, pictures and more details from the show, but just to let you know that we were able to raise some money for SAMI (Sickle-Cell Advocacy and Management Initiative).
We will present them with the money next week, and hopefully, the lady who needs treatment can thank you guys at some point!

Tuesday, March 23, 2010

Rocking THESE GENES of mine... a personal story

When i am asked to write about my journey as a person living with sickle-cell, the challenge for me is finding the right balance. I do want to share my experiences and let you know how it felt, and feels, but i also do not want to come across as self-pitying or whining. Then there is the delicate balance between hope and reality. Yes, you can live with these genes, but it is a painful journey no matter how much i try to coat it!

The best thing?
I just write and hope that if one person reads it and feels better, then God's purpose for me continues to be fufilled.

Yes, i have learnt to see my genes as part of my purpose. For any other option would drive me insane. How do you explain to a child that they are living with a disorder that is incurable and was inherited at birth, and came about simply because two people loved each other and brought forth life? How do you, as that child, wrap your head around it?
For me, there were transitions, but the most memorable are the angry, and the happy.Angry was at my mother (oddly, never my father. But i am a fierce daddy's girl), and more importantly, at God. You see, it was impossible for me to understand how God could love me and punish me at the same time. I had wild discussions with Him, i even urged Him to kill me, Once, i was so ill that even the generator got on my nerves and moving a muscle spelt pain. That was my most fun moment because after i spent all my time asking God to take me home, i felt at peace and was no longer angry again! I do not always share this story as it sounds 'spiri koko' (spiritual) but since that day, i knew i had to either wrap my head around this disorder, or let it consume me!

I chose the former.
First, even though i could not remove the cells, i could remove my attitude to them. Instead of hating them, i loved them. Yes oh, even when i would have to be rubbed all over by my mother (sweet mother for real) with transvasin, and sleep with a hot water bottle, all because it was my birthday and i just had to dance. I mean, what is a mother to do; not allow her child a birthday party because she would be in pain later? I loved those cells even when it meant my mother would find some other concoction for me to try next. I mean, i was luckier than most; they never tried to beat the evil out of me abi? I loved my genes oh, even when it meant my father spent more money on hospital bills than school fees when i was growing up, and even though it meant my sister got a little less attention than i did (and i love her for never making me feel bad about that!).
The more i loved the genes, the less they seemed to bother me. And the more i spoke about the genes, the more i found coping strategies. The more i understood the genes, the more i worked around them.

Yes oh, i was the girl in the hospital who would never flinch as they stuck a needle in her arm (I once took fourty eight injections in one famous week), and i was the girl determined to make people laugh because the more they laughed, the less they focused on me and why i was so thin, or why my eyes were yellow!
But as i grew up, i realised that loving but ignoring the cells was not enough. I had to speak up about them. I had to let my friends know that i could hang out with them, but only for this long! And i had to find out from other people living with sickle-cell, what their journey was like! The more i did this, the less it became about me, and the more it became about a nation and a thinking!
Why is sickle-cell practically stigmatised? We should talk about it, and noone should be ashamed to either live with it, or have a family member or friend that lives with it. And why should we deal with it alone when by asking and sharing, we can find more ways of coping with ours? I mean, people have asked me to speak with their friends or family members that live with the disorder but are ashamed or afraid of it, and even though i am not a medical expert, i do enjoy encouraging people!

You can live with sickle-cell. I do. Tope does. Toyin does. Subi does. Jacob does. Tunji does.
Some days, i do not hear from Subomi so i know he has been ill, and i call and we say hello. And vice versa! We are not hiding, and we are not letting our genes stop us from living.
We may not express it the same way, but i think somewhere along the line, we all realised that it really was not how long we lived that mattered, but how well.

Thursday, March 18, 2010

Ten Things to Know about JEANS FOR GENES!

Hi guys!
Here are ten things to note about JEANS FOR GENES, the upcoming fashion party market!

- Jeans for Genes is a fashion show/party and market! IT is scheduled to hold on Sat March 27th, at the swanky SWE BAR, City Mall, Onikan, 3pm.
Jeans for Genes is brought to you by THESE GENES, a sickle cell project run by Tosyn Bucknor. These Genes aims to create awareness-based social programmes, for people to be able to hang out, have some fun, and ultimately, speak and learn about sickle cell disorder.

- The first edition of JEANS FOR GENES held in 2008 and featured lovely designs by Byge, Beampeh and My Q, with music performances by Bez, M.I, Etcetera and so on. (Notice how big they’ve become now?! We saw something back then!)

- This year, JEANS FOR GENES is all about TEESHIRTS! Nigerians love teeshirts, which truly are multi-purpose when you think about it. Teeshirts are used for awareness campaigns, as fashion apparels, and to create a bond. JEANS FOR GENES 2 would like to show what Nigerian designers are now doing with teeshirts on their mind!

- Jeans for Genes is three things in one- an awareness fashion show, which will feature sickle-cell awareness and a fashion show, a teeshirt party with music, drinks (bought by you o), and networking, and a market! Yes o! There will be teeshirts, accessories and more on sale on that day, and the prices will be so good, you’d wish Jeans for Genes was a monthly event!

- It’s JUST a teeshirt right? Not when you see what TONI PAYNE, STRICTLY NAIJA CLOTHING, OUCH! HAPPY FACEZ and IMAGINE CLOTHING do with it! These are five of some of the proudly Nigerian companies whose designs you will see on the runway come Sat Mar 27th! Each of these companies brings something unique to the table, and we are very pleased and excited to have them on board! They have also promised to donate items to the cause, so that proceeds from the sale of same, will go into the final pot at the end of the day!

- The models that will walk the runway will be beautifully made up by LABELLE’s TOUCH. So expect them to look glam! They will also exhibit accessories designed by BUCKSTONE VENTURES, T.T DALK FOOTWEAR, AKIN BEADS, and MY DAZZLE. And everything they model, will be available for sale! (We emphasise that. Forgive us!)

- It’s not just fashion though! We have to have music! And when we say music! We mean an OVERDOSE of music! We mean SKUKI and LOOSE KAYNON, WIZKID and LAMI, ZARA and HAKYM THE DREAM, MODE NINE and SKALES, DIPP and MO CHEDDAH... And the very pretty DOOSHIMA DABO’ADZUANA as the m.c on the day!

- Jeans for Genes is a teeshirt party so OF COURSE, the dress code is TEES AND THESE GENES! The question is... how creative will YOU get with this dress code?! Tees can be dressed up or down, they can be sexy, cute or classic, they can be zany or simple... So which direction are you thinking of going? NIGEZIE, SOUNDCITY,MTV, HIP ON TV, QUEST TV, STV, BELLA NAIJA, GUARDIAN, and more, will be on the Red Carpet, hoping to capture sexy and creative interpretations of the dress code. Remember, its TEES AND THESE GENES!

- But we couldn’t have put this event together without support from s.h.a.r.e, Zapphaire Events, X3M Music, YAT, and our lovely volunteers like Bolaji Ajayi! Youth Are Talking (YAT) will tell us a bit about H.I.V/AIDS so please watch out for their stand, and runway!

- So we do hope we will see you on SAT March 27th at Swe for 3pm, armed with enough cash to bargain shop and your phones to network?! Wait though! Is your name on the guest list yet? Not sure? Well, let me break it down! To get an invite to the Jeans for Genes fashion party/market/show, please get a specially designed THESE GENES teeshirt! There are two style, ‘THESE GENES CELEB’ and ‘ROCK THESE GENES’. The tees are available now and cost N4000! Please call or text 08023066252 to get your name on the Guest List o o o o o o o
So that’s ten things you need to know! Hope to see you there!

Friday, March 12, 2010

Wait A Minute; What is Sickle Cell Disorder?

 What is sickle cell disease?
Sickle cell disorder (SCD) is a family of inherited disorders,
of which the most severe and common is sickle cell anaemia
(HbSS). SCD affects how red blood cells carry oxygen around
the body, is a lifelong condition that affects both males and
females, and is the most common genetic disorder in England.
Sickle cell disease can cause fluctuating symptoms ranging
from pain and infection to anaemia and fatigue.
What do sickle cells look like?
Normal red blood cells (see above picture) are disc-shaped,
flexible and can squeeze easily through small blood vessels.
These cells contain haemoglobin which delivers oxygen to where
the body needs it and give the blood cells their red colour.

People with SCD have abnormal haemoglobin. When this
haemoglobin gives away oxygen it sticks together to form long
rods in the red blood cell. These rods become rigid and can
change the red cell from round and flexible to a shape like
a sickle. It is because of this shape that sickled red blood cells
cannot flow easily through small blood vessels. This means the small blood vessels
can get blocked and stop oxygen from flowing.
Who does sickle cell disease affect?
SCD affects mainly people of African and Caribbean descent,
but people from Mediterranean and Asian backgrounds can also
be affected by it.
How many people have it?

There are about 12,500 people with SCD in the UK. It is thought
that the number will increase in the next 10 years.
Why do I need to know about stroke?
Children with SCD are more likely to have strokes than those
without the disease. Of all people with SCD, the risk of stroke is
highest in the most commonly detected type of sickle cell
disease – sickle cell anaemia (HbSS).
The risk of stroke in children with SCD is greatest between
the ages of 2 and 16. About 10% of all children with SCD
will have a stroke by the time they are 20 years old. Stroke
recurrence is also a major concern for children and their families.
Stroke recurs in over 60% of children with SCD.
If you have a child with SCD, make sure you speak to their
doctor about the risk of stroke.

Tips for parents
• If your child has SCD, make sure you speak to their
doctor to find out more about reducing the risks
of stroke and other complications.
• Make sure that the school is aware of your child’s
condition and has drawn up a care plan.
• Provide the school with booklets to explain
what SCD is.
• Make sure family members and teachers are aware
of the signs of stroke and the possible indications
of ‘silent’ stroke.

Tips for teachers
• Be aware of children with SCD in your school and
draw up a care plan.
• Listen to the needs of children with sickle cell, especially
regarding fatigue, dehydration and toilet needs.
• Make sure you are in regular dialogue with parents
of children with SCD.
• Learn the signs of stroke and ‘silent’ stroke. Look out for
changes in behaviour or attention as these may be signs
that a child has had a ‘silent’ stroke