Ever since I was born I have suffered from a bleeding disorder called Haemophilia (Severe Haemophilia A in my case). My mum was called 6 days after I was born and was literally told I suffered from it and that was the phone call. I kind of feel the need to write this as whenever it crops it's way into a conversation it can be hard to fully sum it up, and hopefully by posting this I can clear up a few misconceptions anyone reading has, and hopefully entertain/inform them what effect it's had on my life.
15 years on from that phone call my mum received, I still suffer from the disease and it's still a very prevalent part of my life. Haemophilia is a blood disorder in which I am missing a clotting factor called Factor 8. This means I can bleed into my joints and muscles, which then cause them to swell and make movement very painful indeed. I have to take medication in the form of an injection every other day, which is basically a clotting agent which acts as a substitute for the Factor 8 which is missing in my blood.
Whilst at the moment this isn't affecting me as much as it can do (I probably have 1 or 2 major bleeds a year, as I am currently having now) there have been times in my life where it has been rather severe. When I was coming towards the end of primary school, I developed something called Inhibitus. Inhibitus is basically where the medication I take became barely effective, meaning I was having to take medication on a daily basis. What was odd in my case is Inhibitus is a problem which usually develops when people's immune system's are not used to the medication (usually in Haemophilia it is toddlers who have had one or two injections) yet I had taken the medication well over 1000 times by the time my Inhibitus developed. I spent a lot of time after this diagnosis in hospital in Oxford having blood tests trying to determine what exactly was going on, and in the end we decided that a treatment which would knock out my immune system in the hope when it came back the Inhibitus would not return with it. Unfortunately this did not work, but as oddly as the Inhibitus arrived, it randomly disappeared a few months later, something which as I'm sure you can imagine I was jubilated with, and something which to this day I do not take for granted. Although the fact it developed in such random circumstances, I have been clear of Inhibitus for a while now and *touchwood* I'm hoping it won't be coming back anytime soon.
Even though I have Haemophilia, I must say I feel extremely fortunate with how it currently does not make too much of an impact on my life. When not suffering from a bleed, I am able to lead pretty much a full life. I play football for a team, I don't tend to miss to much school due to it, I am always out and about and although it is never really talked about, I have a great bunch of friends who are all really understanding about the condition and are always there if I need a helping hand (the lads know how to throw about the banter but I would much rather they felt comfortable bringing it up then feel it to be a touchy subject).
Whilst I worry about how it could effect my future, it doesn't really seem to alter my plans for what I want to do. Whilst I could wallow in self pity over how I will never be a footballer (which never would have happened anyways due to my mediocre talent and downright shocking lack of pace) I prefer to look at what I still have to look forward to. I can still try to follow my dream of being involved in Drama, and I can still go on to have a family, and I can still go out and enjoy life etc.
My sole intention of writing this was that anyone who sees this who has ever wanted to ask me about it would either find out what they want to know or would feel a bit more comfortable asking me questions. I was a bit nervous about posting this because I don't want it to come across as a precocious account of how I 'constantly struggle with a life-changing illness' because I know myself that whilst it can effect my life it really doesn't make to much of a difference to the way I live. I hope it's made things a bit clearer to you, and if you didn't plan/know anything about it, hope this blog has entertained you!
Cheers for read guys, feel free to follow me on Twitter @connorslasberg
Till the next time...