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.
Tuesday, March 23, 2010
Thursday, March 18, 2010
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
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
Thursday, March 11, 2010
The tee shirts are here!
We would like to thank IMAGINE CLOTHING for working on these tees tirelessly and delivering them on time and on point
We love you!
Remember that these tees serve two purposes
- raise funds for SAMI, our partnered sickle-cell charity
- act as the invite for the event, JEANS FOR GENES!
Jeans for Genes is of course, our fashion show which holds in a few days time. Sat Mar 27th!
Check here http://thesegenes.blogspot.com/2010/03/so-guys-here-is-update-but-first-lets.html for more!
We have two sets of designs!
A} ROCK THESE GENES!
If you would like to declare that you rock your genes, then this teeshirt is for YOU!
black: male (MEDIUM and LARGE), female (MEDIUM)
blue: male (MEDIUM and LARGE)
red: male (MEDIUM and LARGE)
lemon: female (SMALL and MEDIUM)
pink: female (SMALL and MEDIUM)
B} THESE GENES CELEB
This one is for all our every day celebrities! These Genes make you a celeb!
black: female (MEDIUM)
brown: male (MEDIUM and LARGE)
pink: female (SMALL)
red: male (MEDIUM and LARGE), female (small)
And how much do these beautiful teeshirts cost?
( i am glad you asked!)
N7500 if you buy two at once
N35000 if you buy ten at once
N60000 if you buy twenty at once
and more discounts available!
So now that you are ready to buy and know how much they cost, WHERE do you pick them up from?
We are glad you asked!
(You didnt ask? Sure? Ah well!)
You can purchase a THESE GENES tee in one of three ways!
1. BOOK! PAY! COLLECT!
Book a teeshirt buy paying the amount into an account. Then pick one up!
(pls send a TEXT to 08023066252 to get the account number....)
2. COME! PAY! COLLECT!
Come to any of the collection centres, pay and pick it up!
3. Buy at the gate at the event
THIS IS NOT RECOMMENDED for the ff reasons
- teeshirts would have been sold out by then (we fast and pray)
- teeshirts will cost more then. (hmmn, maybe you should!)
- swe (every friday)
for the addresses for yaba and ikeja, pls send text to 08023066252. You see, this IS the internet!
With these few points of ours, we hope we have been able to convince you and not confuse you...
Wednesday, March 3, 2010
So guys, here is an update!
But first, let's say, its March already?
This means there are only a few days left to go!
The biggest fashion show/party/market is going down on Sat Mar 27th at the swanky SWE BAR, in Onikan!
Our designers are ready:
TONI PAYNE, STRICTLY NAIJA CLOTHING, OUCH! HAPPYFACEZ and IMAGINE CLOTHING!
See what their designs are like, and buy these tees ON THE SPOT!
Some other designers will also have their gear on sale that day!
And our models will be made up beautifully by LABELLE'S TOUCH!
Recently nominated for a Future Award, this make-up house currently handles on-the-set make up for TINSEL, and also made the models up during the MNET FACE OF AFRICA finale in Lagos!
But what would clothes look like with no accessories?
Well, thanks to BUCKSTONE VENTURES, T.T.DALK FOOTWEAR AND ACCESSORIES, AKIN BEADS and MY DAZZLE, our models will show interesting and cutting edge Nigerian accessories!!!
We. Cant. Wait!
(we will all have to wait till the 27th sha)
Just remember to hold enough money on that day to shop!
Clothes! Shoes! Bags! Pictures!
Apart from the Red Carpet which is proudly supported by SOUNDCITY, QUEST TV, HIP ON TV, NIGEZIE and more, there will be fashion photogs around to take arty pictures of your friends and yourself!
Imagine coming for the JEANS FOR GENES sickle-cell party and leaving with MORE...especially images to last a lifetime!
All this while being entertained by:
Dipp, Skuki, Lami, S.K.A.L.E.S, Hakym the Dream, Zara, Overdose, Willy Bang, Loose Kaynon, Mo Cheddah and MODE NINE!
And this big, wonderful event for purpose, will be hosted by DOOSHIMA DABO'ADZUANA!
Jeans for Genes creates awareness about sicklecell, and this time, will also raise funds to pay some hospital bills!
Jeans for Genes is proudly supported by:
This event is STRICTLY BY INVITATION.
For INVITES, and more information about the event, please check out the blog
join the facebook event page,
JEANS FOR GENES 2....
Music! Fashion! Sickle-Cell!