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Sickle cell warrior Zalaiyah

An 11 Year Olds Insight Into Sickle Cell Anaemia

11 year old Zalaiyah shares an honest insight into what it’s like living with sickle cell anaemia.

Did you know that July is UK Sickle Cell Awareness Month? In light of this we wanted to share this insight into sickle cell anaemia in the words of 11 year old warrior, Zalaiyah. We came across this video she did for world sickle cell day and wanted to share it with you all.

Press play and watch or scroll down to read her words. We hope this will be the first of many educational blog posts by this amazing warrior.

Listen to Zalaiyah share her insight into sickle cell anaemia.

Hey,

My name is Zalaiyah and I am an average 11 year old girl. I like to play Minecraft and spend time with my family and friends. I also really enjoy English and history, I don’t really enjoy maths as much although I’m not the worst at it. My maths teacher says he cant quite figure me out but that’s his problem….LOL.

I know I said I’m your average 11 year old girl but actually I’m not. Since birth I’ve suffered with sickle cell anaemia… Sickle cell disease; whatever they call it these days. Not many people know about it or are interested to know about it because they don’t suffer with it themselves or know anybody that has it. So I’m going to give you an insight into sickle cell in my own words.

Sickle cell disease is an inherited blood disorder. I suffer with HB ss which I inherited the “S” gene from both parents who have the sickle cell trait giving me full blown sickle cell. Hb ss is known as the most severe form of sickle cell disease. People with sickle cell have less healthy red blood cells to carry oxygen throughout the body which our organs need. The abnormal red blood cells are shaped as a crescent moon which are rigid and sticky. They get stuck in small blood vessels and don’t allow blood and oxygen to flow properly and get blocked which then brings on episodes of severe pain called pain crisis which can come unexpectedly and very quickly

When suffering a pain crisis, I normally get pain in my arms and legs and sometimes my chest. A lot of the time I don’t say when I’m in pain or feeling symptoms because I don’t like taking medication, missing out on things at school and the main thing, going into hospital not just because I’m being prodded and poked but because it causes a lot of stress for my mom.. who shows she’s a very strong woman for me but deep down she’s hurting and very emotional at times. She tries her best to manage my pain crisis at home with medications such as morphine and other pain medicines and antibiotics but sometimes we have to admit defeat and admit myself into the hospital lasting from days to sometimes even weeks.

I used to feel a way watching other patients have visitors come to see them and there was just me and my mom, im sure family knew I was in hospital but did they come visit? Mmm Did they even care? Well that’s up to them. I hold no bad feelings each to there own I’d say. I had my mom juggle working long shifts, which meant her leaving me alone, going home to cook to bring me food and to fetch me things I needed. She never once complained or asked anyone for assistance, she did what she had to do and she was all I needed.

These pain crisis are soooo painful that depending on where the pain is, I’m not able to walk or even toilet myself. I’m having to depend on my mom or a nurse to physically lift me up and put me on the commode – which still hurt by the way. I’m not able to feed myself or simple things like picking up a blanket or sitting myself up and getting myself comfortable. The pain I feel is horrible and I wouldn’t wish it on anyone. It comes really sharply and sometimes it causes me to not breathe properly and causes my oxygen levels to drop drastically. There is Nothing more scary than struggling to breathe and your chest slowly tightening, aswell as the pain your feeling; the oxygen mask and morphine became my best friend.

A lot of the time morphine didn’t help it only took the edge off a little. I was given a PCA machine where I pressed a button and would administer it myself, the nurses used to laugh because I got trigger happy. There was one time I would never forget, nothing at all worked and I was given ketamine, which then I started hallucinating; funny now but wasn’t at the time.

When I go back to school I have tons to catch up on and all of my classmates ask me if I’ve been on holiday. I struggle particularly in maths but not so much in other lessons. Maths gets quite hard when you’ve been away for weeks because all the things you’ve learnt are all jumbled in your head, it makes it even more stressful when you’ve got so many new equations to learn and add into your work, when I finally get the hang of things  and get back into routine at school I’ve either got to leave early for hospital appointments, routine  blood test, consultant reviews, MRI scans, dopler scans and physio which frustrates me because I’m set back again so basically my life is one big rollercoaster.

As I grow older I know I may face difficulties but I won’t let that get the best of me as I have a good support network. To help people like me please consider donating blood especially those from the black community as it stops us from getting severally ill and for those in my case helps us stay alive.

Happy world sickle cell day

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