Hoseok: Thalassaemia

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Hoseok's POV -

Whilst my mum was pregnant with me, the doctors told her I had a genetic disorder called thalassaemia. Since they were able to see and diagnose it before I was born, it would be more than likely that I would have a severe case. I was going to lead a life full of hospital appointments, and just being generally poorly for long periods of time.

And that was how my life started. I only started getting symptoms when I was about 4 months old. Although I was a healthy sized baby at birth, I wasn't really growing properly, and I wasn't gaining any weight properly. I still pretty much looked like a newborn baby. My parents said that I wasn't happy, and I didn't play or giggle, and I didn't even cry much. I just slept, and if I wasn't sleeping, then I would be tired and floppy. It was hard to feed me properly, since I wouldn't grip properly, and I wouldn't suckle when I was supposed to.

My parents were tested, to see if they carried the thalassaemia genes, and, unfortunately, they both did, which meant I ended up with both faulty genes. My parents were told again that I probably wouldn't end up getting much out of life. Although, with treatments, I would live a longish life, I would just be very ill, and need to rest lots.

My parents didn't tell me this for a long time, since they didn't want to offend me, but the doctors also thought that I had a bone deformity in my face, because of how long it is. However, I just have my dad's genes. I look just like him. And yes, I did take offence to that. I hate it when people make jokes about the way I look. It's just not necessary.

As I got older, I stayed very small, and was very weak. I didn't learn to walk until I was just over three years old. I have a weak arm, too, which I broke 9 times when I was between the ages of 1 and 5. They can't put a bar or plate into it because the bone is too weak, and it'll destroy it, and then I'd end up losing my arm. I couldn't push things properly, and I couldn't lift anything heavy. I stayed tired and sleepy, but I was starting to pick up.

I did pretty well in school as I was young, despite having a massive health condition, but it didn't affect my cognitive learning, so I was okay. Just small, a little pale, and restless with tiredness. I didn't get bullied over being a little different. In fact, I was pretty popular, and the kids wanted to learn about my health condition.

Because of the symptoms I already had, it was hard to see the anaemia creeping in, until it was nearly too late. I was already pale, and a bit yellowish, from thalassaemia, and I was already tired. It just didn't seem any different. Thalassaemia means that I have little haemoglobin, which meant my red blood cells couldn't carry oxygen around my body. Although I had enough iron in my body, I didn't have enough oxygen, and therefore developed anaemia. We knew it would come, as it pretty much comes hand in hand with thalassaemia, but we didn't know when.

As I was only 5 when it happened, I couldn't really explain my symptoms properly, either. I couldn't explain why my heart felt funny, or how I felt out of breath all the time. I couldn't explain what dizziness was, and I only had enough vocabulary for 'my head hurts', or 'my chest hurts'. Since I was already pretty sickly, my parents didn't think much of it.

I ended up collapsing in school. I hadn't been able to concentrate for days, and I kept getting in trouble for not listening. I was eventually told to go to the headteacher, and tell him why I was naughty. As soon as I stood up, I'd heard this odd whooshing sound, and then I woke up in hospital.

That's when the constant hospital appointments came in. I already had plenty, just so my parents could tell the doctors how I was in myself, but now they had doubled. Since there was no way to cure my anaemia, I started to need a blood transfusion regularly. It started out as one every three months, but, as I got older, and more active, they changed to one a month.

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