“For many around the world, this time of the year is the happiest, but 2020 has been a tough year for us all. Spreading Christmas cheer in any way possible is always at the center of my heart. The Christmas season is my favorite time of year.
My name is Sarah-Jane Nkrumah, I’m 26 years old, and I live with Sickle Cell. Sickle Cell Anemia is an inherited red-blood-cell disorder where there aren’t enough healthy red blood cells to carry oxygen throughout my body. Normally, the flexible round red blood cells move easily through blood vessels, unlike my cells, which are shaped like sickles or crescent moons. This makes it hard for blood to flow leading to something like a ‘traffic jam,’ which causes an intense pain episode called a ‘Sickle Cell crisis.’
I was born and raised in the UK, London. Originally I have a Ghanaian background. I grew up with my mother, father, and three older siblings, who have been amazingly supportive during my journey. I spent years in and out of the hospital as l was diagnosed at birth. I was 6 months old when I had my first crisis. Sickle Cell causes severe pain. When my mother described my first crises to me, she said, ‘Your arms and legs were swollen and every time I went to touch them, you would move them away.’ That’s how she knew I was having my very first crisis. As a child, I remember being different from the other children. I couldn’t do the same things they did physically without it impacting my health and causing hospital admissions. I missed out on school often and many childhood experiences.
Having Sickle Cell is not only physically draining but also mentally and emotionally draining. I have had days where I have wanted to give up, struggling to want to fight anymore because the pain and the effects of living with Sickle Cell were too much. When you have lived a life of pain, you go through things no child should have to go through that young. Operations, constant strong medications, being poked with sharp needles sometimes multiple times at once. All of this can take a toll on you, especially on the days where your mental strength is not on your side.
All of those painful experiences did not end as a child. They progressed into adulthood so yes, I still have days where I don’t want to fight anymore but I always try to push myself back into the mindset of not giving up.
I have always tried to never let Sickle Cell steal my life. I have studied, traveled, and enjoyed life. I want to encourage children who are also living with the condition they can live a fulfilling life and they should never let their condition define them.
As a child, even though I went through so much, I was very happy and cheeky. I found strength in being in a ward with many other children who were also living with health conditions. I spent a few birthdays and Christmas days in the hospital, and one thing I will never forget is how special they made it for me and the other children. We had gifts given to us. To a young child, it’s a great feeling during a tough time. So, even as I was hooked up to a drip and medication, I would open my presents and enjoy my day as much as I could considering the circumstances.
3 years ago, I decided I wanted to share my story and raise awareness for Sickle Cell, as there was hardly any awareness in our community for a condition that sadly affects so many people in the UK and around the world. Since then, I have been sharing my life with Sickle Cell and I am the founder of my own organization named ‘Sickle Cell Unite.’
What started out as just wanting to share my story quickly became something that started making a difference. I receive messages from around the world from people telling me because I share my story, they don’t feel so alone in their battle with Sickle Cell. One message that stuck out to me was from another person who had Sickle Cell, it read, ‘This really means so much to me… your page helped me realize I wasn’t alone.’ That’s all I could ever hope for. For others not to feel alone.
I have also participated in blood drives to encourage people to give blood, as I myself receive 6 weekly blood transfusions for treatment which included receiving up to 10 bags of blood. I have done radio interviews and we have also had some amazing fundraisers.
This is when I started wanting to do more so that year, I decided to do a Christmas toy drive. We donated toys to our local Sickle Cell charity. The children loved the toys and sent us a thank you message, so from then on, I knew I wanted to carry on doing the toy drive every year. One of the nurses even said to me, ‘Thank you so much, the children will be so happy. God bless you. This will make their Christmas.’ Seeing the smiles on the children’s faces in the pictures reminded me of being that little girl waking up on Christmas day in my hospital bed and opening my gifts from generous donors, so you could say it came full circle.
My passion for the cause and helping the younger generation who are battling with this ‘invisible’ condition has grown even stronger.
Last year, we gave to a hospital in London and the staff and children were so grateful. This year, things have changed a little, but we have still managed to collect amazing gifts that will be delivered to another hospital in London just before Christmas. As we know, Covid-19 has altered so much this year so we cannot personally give the children the toys, but they will still receive them and that is all that matters.
My Christmas wish, for the rest of the year and beyond, is to carry on raising awareness for this crippling condition. To carry on advocating for the Sickle Cell community and one day, to have a cure for Sickle Cell that is accessible to every person battling the condition.
Until that day, I will do my part to spread positivity and Christmas cheer every year. If this year has taught me anything, it is life is truly precious and we should be grateful for what we have and if I could say anything to my fellow Sickle Cell warriors it would be, ‘Never ever give up. You are strong and you can do this!’
This story was submitted to Love What Matters by Sarah Jane Nkrumah from London, UK. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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