Story of a Hemophilia Survivor

Hi. My name is Kunal, and I suffer from severe hemophilia.

For those of my readers who don’t know, hemophilia is a rare, typically genetic blood disorder in which the blood does not clot normally, a process needed to stop bleeding.

It is a scary disease to live with, I won’t lie. It basically means that I live in constant fear. It usually isn’t so bad for small cuts, but I have to move around very carefully and always be wary of my surroundings.

My parents had a lot of trouble conceiving, I was told. After trying for years and seeking all kinds of medical help, they finally tried some special procedure, very expensive, that worked. But this procedure came at a cost, and this condition, which may have been suppressed or recessive before, became aggressive in my genes. This gave me the disease that could kill me.

I have a lot of pain in my joints very often although I have strong, hard bones and it becomes tough to function. In these twelve years of my life I have had eight surgeries already. Whenever any joint or part of my body starts to hurt too much, I have been whisked off to the operating table. It’s unlike the regular hospitals my friends go to, special for hemophilia patients, I suppose. It’s very high-tech and has a lot of cool gadgets lying around, but no one lets me play with them. I see other children there too, but there are so many that I get confused. Sometimes I think it’s the same kid with a different hair colour or even stranger – a different set of parents! Ha-ha.

It’s always that same doctor who helped my parents with conception, and she’s very nice. In all these years, she hasn’t aged a bit and I’m sure she will be our family physician forever. She always operates on me. I don’t know how these operations work, but I do always come back feeling much better, good as new. Until next time, that is.

I first found out that I have this disease when my parents told me. I was pretty young, and I guess I had just barely started speaking. But I remember because they still keep saying the same things to me. Like I don’t understand!

They throw a bunch of medical terms at me that I barely understand. Luckily, I’ve never had nosebleeds or any of the other symptoms yet, which is funny since my case is severe. But I have always been told, ‘Be careful, don’t get cut.’

What they mean is I can’t afford to get a deep cut. I cannot get a deep cut, because then it will never stop bleeding and I will die. And I cannot tell anyone about my disease because they will try to hurt me.

I try to stay away from sharp objects all the time and my parents act very jittery when I get in the vicinity of one. I don’t know why. From all the Google research I’ve done, it can’t be that scary, especially if you have a hospital nearby, but my parents act like I’ll fragile and I’ll break or something.

I have managed to stay safe and not get any deep cuts, except once. I was playing in my room, I remember, when I knocked down a glass bottle and it shattered at my feet. I remember a huge shard sticking out of my calf. I think I fainted before the blood came out, because I don’t remember much of what happened after.

When I was being operated on again, under heavy sedation, I remember having a funny dream, probably because of all the drugs in my system. It was a dream about the same day, and the bottle breaking, and me getting cut again. But in the dream, I reached down and pulled out the glass shard. It was a dream, so I didn’t feel any pain. I bent over and looked deep into my cut, out of plain curiosity, waiting for the blood to gush out. But I didn’t see any blood. It may have been because I wasn’t wearing my glasses. I grasped by calf muscles with my fingers and tried to get a closer look and I saw… sparking. And in the light of the sparks I saw wires – red, green and blue, winding down my shiny bone. And then I remember my parents rushing in at the sound of the crashing bottle, screaming, ‘Reset! Reset!’

And then the dream ended.

Anyway, I’m digressing. The doctor fixed me up, but she warned me that she wouldn’t be able to do it again. She also told me that if I ever do get cut, I should close my eyes and not try to get a better look at it because the strain causes more blood to rush out. And I could die. Oh, and after that operation, I didn’t need glasses anymore! She’d fixed my eyes too. She’s a very good doctor.

I have been very careful since then and have never told anyone about my disease. But this is my story and I pray for all the other people with hemophilia in the world, who have all the symptoms and don’t have such a good doctor to fix them up. I hope you pray for them too and don’t treat us differently, because we’re already trying our best to be normal people. Thank you.

Oh, and I find it really hard to log into my Gmail account because I can never enter the captcha. So pray for that too! Ha-ha!