Mwape's Release

Symptomatic: My Sickle Cell Trait Journey

School Life

Never before have I felt or experienced such a need to spread more awareness of Sickle Cell Anaemia or Sickle Cell Trait until now, following the worst crisis of my life and now it seems this is my new normal on a more progressively worstening day to day basis, although I do not know why!!! 

Although I always experienced sickle cell pain crisis since the age of five years old, I had always had negative run-ins with medical professionals, who would often tell my mother that I was experiencing 'growing pains' no matter how hard she pushed for them to intervene, so the majority of my childhood was spent pretty much normal, with a lot of unexplainable pains in any parts of my body so long as it was a bony area and the exception of at least one to two severe crisis pain episodes a year. Well I am fully grown now and I still experience these 'growing pains!'

For those who don't know what a sickle cell crisis is, trust me, you don't want to know!

It's physical agony and can occur anywhere in the body where there is blood flow, so as blood flows everywhere, this means it can occur everywhere.

 

I Was a Sickly Child and Teenager

Symptoms I often experienced

This would include limb swelling (especially in my hands) and then the only way I can describe the onset of these crisis is like my 'nerve endings being set on fire' that even the slightest brush of my mum's hand on my skin, would make me scream aloud!

Then a fever would come on at the same time, followed by the very real and very debilitating on and off sharp stabbing pains in my tummy, ribs, long bones in my arms and legs and in my pelvis and back too.

Often my stomach and ribs would swell too and hurt so much.

I grew up seeing mental images of myself as a child being laid in bed unable to do anything myself. It got so bad at times that I could not even hold cutlery or feed myself because just trying to use my hands to eat would hurt so much, nor could I bathe myself!

Anaemia would often follow these episodes and chronic fatigue and most times, I recall being unable to function normally for anything between 4 to 8 weeks at a time.

This was the case well into my teenage years and then into my early twenties and now in my mid-thirties.

Often, this affected my periods on a monthly basis, which would also make me extremely ill and I missed a heck of a lot of school, my attendance records were so poor, yet not enough at a time to warrant a Fit Note each time.


One Particular School Trip - Gifted & Talented Project

I do remember one particular time I was on a school visit attending another school and sat with my girl-friends, in a group on a table in the middle of the class room and I began rocking backwards and forwards and moaning.

My friends had to signal to our Teacher at the front of the class to come and get me, because I was literally trembling by this time and my pain level was fast rising. Bless my Teacher, I was a slender build, yet athletic with the typical African features of wide hips and buttock region and the smallest waist and broad shoulders, who towered over my very small Geordie Teacher.

My Teacher took one look at my face and knew something was off. She came and got me from where I was sat and took me on the long winding path to the School Nurses office. I recall her telling me that I looked green and was trembling so violently, she thought I was going to faint whilst we were walking.

I felt so nauseous and light headed with severe stabbing pubic bone pains and period cramps too. Anyways, we finally got to the Nurses office and I remember feeling an urgent need to relieve myself as I often do at the onset of my monthly cycle and I got stuck feeling so unwell in the toilet, I had no energy to get up.

This of course worried both my Teacher and the School Nurse, but eventually I managed to freshen myself up after what must have been 20 minutes just sitting there trying to obtain the energy to use the bathroom and function on my own. The Nurse then administered some pain relieving medication, some water to drink and gave me a hot water bottle and I was allowed to fall asleep for the duration of the afternoon in the little single bed that was in there.

I have never, ever been to another Nurses Station in a school ever since, but I recall relaying the story to my mum and never forgetting that rather embarrassing school trip, yet I had never been so grateful for such a great Nurses station within a school either.

The trip was supposed to have been a treat as part of the Gifted and Talented Project, which included extra support and additional field trips for students who seemed to excel.

I also recall missing my mock GCSE exams due to being severely anaemic for over 8 weeks, that all I remember doing was sleeping.  My mum recalls having to wake me up just to get me to eat and off back to sleep I would go.

When I graduated high school, I also missed the Black Achievers Award ceremony, where I missed collecting my award! This began a long list of missed events to this day!

Pain Relieving Medication

When Only A Hot Water Bottle Will Do


Thank You Lord - I am So Grateful

So Grateful for My Amazing African Queen - My Mama

For my mother, who had not been working since moving to this country with my younger brother and I as two young children.

She arrived here not knowing a single soul here except the Lord, whom she trusted with her whole heart, so this made her beam with pride and joy knowing that I had the chance to show her what I was truly capable of!

She had tried to pursue and was attending college at the time, way back in 1990, but my brother had some adjustment problems whilst trying to settle into reception, so she was often called out of her classes, which at the time, was unacceptable. So she gave it up and was a stay at home mother who was literally at our beck and call whenever we needed her!

I am so grateful to her for all her hard work and years of sacrifice she gave to my brother Naeem and I, because she would have been a fantastic Nurse!

She has since been my at home Nurse, little did I know just how much I needed her growing up when I was made physically dis-abled to care for myself when my crisis were so severe, even to this day and I am now in my mid thirties!

To read more about my story as a symptomatic carrier of sickle cell, click here