Mwape's Release

Symptomatic: My Sickle Cell Trait Journey

The Worst Crisis of My Life and Beyond....

The Long Road to Recovery....Physically and Mentally

Figuring Out How to Have a Good Day Again!

I still am in shock and can't find my is taking me such an effort to just be okay and to get out of bed!

The road to recovery is going to be a long one! It is a mental and emotional battle as much as a physical one! 

What My New Normal Looks Like.....

16.01.2021 - Just a shout to my fellow Sickle cell warriors who have been checking in on me on this confusing and painful journey. I had to let my support group on Facebook know that I appreciate their love and kind wishes. Processing my emotions and fighting to get my mind right!

My Thoughts following my ? Mini Stroke.....

Following the video below where I noticed my face had dropped - because my right side was moving, it felt like my right side was abnormal, as my left side was paralysed, hence stating in panic that my right side had dropped.

They say it was ?Bells Palsy/?Mini Stroke.

I also still have the associated limb weakness to this day -  1st February 2021, which I had been complaining about since June 2020.  This is a symptom of strokes.

I had an electromyography (E.M.G) test on my right side, as my right side limbs are still not functioning properly today 02.02.21, regardless of what the medics seem to believe at present. 

I know I had a mini stroke!

I am in tune with my body and I had been going mentally blank, forgetting my train of thought when talking to people and forgetting everything I was in the middle of doing, including how to do my job whilst working from my home office. 

Strokes are common in my family, on my Mother's side and silent strokes and strokes are a common complication of sickle cell anaemia and I have presented as if I have the full blown disorder ever since the age of 5 years old.

I am still being ignored and fobbed off by the doctors when I mention I am a symptomatic carrier, even though following surgery and anaesthetic.

I ended up suffering yet another severe crisis in 2019, just a few hours after being exposed to the cold air on the ward, despite my asking for extra blankets.

I took photos of using both mine and my mum's puffer coats to keep warm, because my body felt like ice water was running through my veins. That's another story, for another day!

Strokes, are a 'warning' for us with the trait, but it doesn't mention them being a risk at all in all textbook guidelines, which I have read out there!

You are at a higher risk if it runs in the family though.  My uncle has just passed away following a stroke back home in Zambia (Jan 2021), my maternal grandfather suffered two strokes, but survived them and lived until he was 101 years old, after fully recovering and my mum's big sister has still got a facial droop following stroke, living with a stent and having undergone rehab a number of years ago. 

So if you're a carrier please take note of any symptoms you may have indicating early warning signs and keep pushing for yourself to be seen and heard


***Grab your copy of my book here and find out what you NEED to know and how to push for the tests you Require and empower yourself by understanding the specific triggers, warning signs and symptoms going into crisis.***



16.12.2020 - The Day my Face dropped - I believe I had a mini stroke! Before calling an Ambulance and being admitted to A&E! Day 1 of this horrendous ordeal! I waited 2 hours!

This is where I noticed my face had dropped - because my right side was moving, it felt like my right side was abnormal.

My Ordeal In Pictures

So these are some of my videos taken and posted to spread awareness on YouTube last year, when I could actually function. 

The photos are of  when I was admitted to hospital after being taken to A&E by ambulance or just before and after, whilst symptoms began getting much worse than they had been earlier on in the year. 

I share these not for sympathy, I hate showing myself looking like this, it isn't pretty, but sickle cell trait is not pretty at all.

Even if you  are not  a symptomatic carrier, it does not mean there is not a possiblity of you ever experiencing these complications. 

There is every possiblity that one day you might have symptoms,  especially under specific circumstances, because so long as there is a percentage of abnormal haemoglobin in your blood, there is always a risk to your health. 

I share because it might just save someone else's life and make the medical world more vigilant in recognising us who are symptomatic as having a very real condition.

I hope that funding for better treatment and easier accessibility and acknowledgement of this potentially life threatening condition is provided one day soon for those of us who present with symptoms, but are only deemed 'carriers'!

From: Top left I was still in hospital and the others I was recovering at home 25th December 2020 onwards

19th December 2020 - Day 4 In Hospital

24th December in hospital - Day 8- Discharge Day

Gross Medical Negligence....

To this day, I have not been provided with any physio for my face, nor for my associated limb weakness.

I am still having pain and numbness on the one side of my body in my head and neck. I was told I had nerve pain, but it does not feel like nerve pain, trust me I have had nerve pain elsewhere in the past 5 years and this feels very different!

My Aunty's symptoms of stroke were exactly like mine, where there was a feeling of numbness around the mouth and limb and arm pain the day before suffering her stroke. 

Like me, she only noticed something was wrong after trying to move her mouth whilst eating and it felt numb and the food fell out of her mouth hitting the floor. 

My body told me something was wrong a week prior to being admitted into hospital, as I packed a hospital bag exactly a week beforehand.

With previous encounters of close calls, I'd come to know my own body and I felt I had come to a really scary place last year December.

I felt something bad was about to happen and so I packed myself my own documented care plan!

Still medics wouldn't listen to me, so this is why I have now chosen to compile my own evidence blog and I choose to share, because then there's a case should anything unfortunate happen to me, along with the hope that it might help others who are experiencing the same kind of gross medical negligence!

I pray it's not too late for other's out there, by the time this is read, because as I have always done to medics in charge of my care, I told them so!

Day 1 on the ward - 17.12.20 - all hooked up to an I.V. - they always struggle to find my veins, this is so painful!

Day 1 - on the Neurology Ward L25 in Leeds General Infirmary - awaiting my MRI Scan of my brain with a swollen face

The Ugly Truth about Sickle Cell Trait From My Experience

Following me having severe headaches since March 2020 with left side neck pains and left side of my head crisis pains at night, accompanied with blurred vision.  I was in agony and feeling like my head was about to explode, especially above my left eye, it felt like my eye was going to burst open (especially at night time) where I couldn't function.

I was so unsteady on my feet, walking into walls and doors when I would wake to go to the loo!   


15.12.20 - The evening before I was admitted to hospital - severe head and neck pains and right arm pain

Checking In.....Just my thoughts

Keeping You Up dated on what I was diary

My Symptomatic Journey

I have always known I carry sickle cell trait, as growing up I often experienced debilitating painful sickle cell crisis in my arms, legs, my limbs would swell up and I often would be off school and even work when I first began working life. I hope this may save someone's life!

What Triggered Me Going into Crisis June 15th 2020

A call to action!
So I am confrontational by character I dont shy away from things, except when it means myself being in the spotlight, but this time is different. If I want change Medically, then so be it! This is much Bigger than just Me!