Living with

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This website is intended for carers and patients living with haemophilia.

Living with Haemophilia

Inhibitor view

A young man tells how he approaches life and work

I was diagnosed with haemophilia when I was six months old but I was always having problems with the haemophilia treatment they gave me and I had lots of bleeds.  When I was four I was then diagnosed with inhibitors.  Now I am 18 and my inhibitor treatment works well, it just about copes with the inhibitors, especially considering how bad my legs are. 

I always really wanted to work and never considered anything but going into full-time work.  It was always the only option for me.  That meant that I made allowances and changed my lifestyle to make sure I could work.  I have now been working in a bank for two years and I really enjoy my job.  I was doing four days at school and then one day at the bank on a work placement.  It worked brilliantly and I think it is a really good way to get yourself into work.  I finished school on the Friday and then started full time on the Monday, it was that easy.

That’s not to say that haemophilia and inhibitors didn’t make a difference to the way I grew up.  I had to learn to adapt, knowing what I could and couldn’t do.  I learnt by my mistakes and made sure that I didn’t do the things that hurt me again.  It is hard, but you learn to adapt. 

I also think that the more involved you are with your treatment, the better it is.  I always wanted to know everything about my treatment and now I am able to make decisions about my treatment on my own.  I feel in control and well informed.  I think that the way I have treated myself is part of why I am now able to work full-time.   It may be difficult and sometimes you don’t want to talk about it, but I think being involved has helped me. 

At the time, being at school and with your friends seems so important and it is.  But, I don’t think it is as important as what is coming up when you leave school and shapes the rest of your life.  Definitely, the more you treat when you are young the better it is for you in the future.

A practical tip for managing inhibitors is to make sure you don’t do anything too soon.  I tended to do things too quickly after my internal bleeds had stopped.  When you are young you want to forget about it and be like everyone else but I now wish that I had waited a little bit longer before walking after a bleed.  It does make such a difference in the long term.

I would also recommend physiotherapy to people. I think it’s brilliant.  However, I have sometimes been pushed too far with physiotherapy, which obviously makes the problem worse.  Physiotherapists who don’t know much about haemophilia have to be willing to learn something new because you can’t push your body too hard or have too much physiotherapy.  Although, when you get someone who understands haemophilia, it’s amazing!