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Nana’s Story

Sickle cell: Behind Closed Doors

Nana Ossei story.
Sickle Cell and Young Stroke Survivors run a project called” Behind Closed Doors.” It is a platform that allows children and young people affected by Sickle cell to give an account of how they are feeling.
This is my story.
 
My story begins in 1989 when I was in primary school; I went to lunch, where I picked up a lunch plate with my right hand and as I transferred to my left hand I dropped it, the same happened when I went for dessert, I dropped it again.
In the background, the dinner lady was going spare, thinking that I was messing around or something, whilst my friends and most of the other children there, were very worried about me. My sister and I were taken home by the Deputy Head, who told my mother that I might have epilepsy.
 
The next day I went to the Doctors (GP) who said to my mother I don’t know what’s wrong with her but take her to the hospital to find out”.
 
Later, that day we went to the hospital, where I was diagnosed with Sickle cell anaemia and admitted, and the next day I had a stroke (Ischemic blockage in the brain) and was comatose for three days.
As I was a minor, the Doctors told my mum of my diagnosis, I did not know what was going on with me, as my mother did not tell me, I guess she was in shock too.
I only realised when I overheard two nurses doing their rounds discussing me, saying sickle cell and only she’ll be dead when she’s eighteen’.
 
Eighteen?!
 
I was only nine years old, Nine!!! Meaning I had only nine years to live?
 
Back in 1989, the prognosis for someone living a long and fruitful life with Sickle cell was quite impossible as it was not as well-known back then as it is now.
 
Here I am, on a hospital bed in the arms of despair and the conversation I had overheard was playing in my mind over and over, sickle cell and only she’ll be dead when she’s eighteen’.
I asked my mum about this and she said, They don’t know what they are talking about”. She was right because I lived longer then they reckoned.
 
Until my first Stroke, I had no symptoms of sickle cell anaemia so when the stroke happened it was literally ‘out of the blue’.
 
The stroke left me with a lot of disabilities and therapies, it affected my left side and I have weakness in my arm and leg, I couldn’t walk, I had to wear a splint on my leg and arm and use a wheelchair for a long time, now I am unable to use my left arm as it is curved and my left foot is shortened.
 
I was on blood transfusions from 1989 to 2003ish and I hated it especially as I had to have a needle in my stomach every night for 10 to 12 hours to remove the excess iron in my blood.
 
I want to work!
When I was 18, I began a long litany of jobs, some which I walked away from and others I was sacked, dismissed! It really knocked my confidence and self-esteem.
 
I decided to do voluntary work, instead of feeling dejected and miserable, so joined Sickle cell and Young Stroke Survivors in 2013.
It’s now 2017 and I am still here, I also believe that this is where I will remain, for quite some time. But we were talking about feelings. In 89 after my diagnosis, I felt worried, scared and frightened, I have felt fatigued, angry, and despairing.
But ever since I met Carol and her team, my anxiety has been replaced by joy and hope because I am accepted and SCYSS helps me with everything.
I like the family atmosphere and everyone helps me out with little things like opening a crisp packet putting my coat on or off and there is always a chance to have a chat.
 
I am still alive and will work tirelessly on my rehabilitation with a greater understanding of myself and disability than I did in 1989.
 
By Nana Ossei 2017
 

 

 

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