Zoe’s story

Hello, my name is Zoe, I am 15 years old and at the age of seven I was diagnosed with severe factor VII deficiency with an inhibitor.

Before I was diagnosed I used to have many bruises, up to 20 at a time. I used to bruise when I was picked up and I stopped using my legs.

In the first year after I was diagnosed I spent a lot of time going to hospital for infusions through a cannula. Problems started soon after as it often took three or four attempts for doctors to get a needle in. This led to me developing a needle phobia, which made things even more difficult. We would spend hours at the hospital each week just trying to insert needles for me to have my treatment, so a couple of months later I had a portacath put in. This helped my needle phobia, as I didn’t have to have needles as often. It also saved many trips to the hospital for needles as my mum could access my needle at home.

Having a bleeding disorder used to frustrate me a lot when I was around seven or eight, because I was told I wasn’t allowed to go on trampolines and bouncy castles; a lot of my friends owned them so quite often I would have to sit at the side and watch. At this age I was also having a lot of problems with my legs, meaning I couldn’t walk without crutches. Sometimes I had trouble with both legs so on rare occasions I couldn’t walk at all. This used to really upset me because my friends were playing outside and I would want to join in but I physically couldn’t.

When my legs were painful and I went out with my family in a wheelchair people would stare; it wouldn’t just annoy me it would annoy my family too. Sometimes I would refuse to go out because it would upset me that much. I struggled to accept what was wrong with me and even after having a port put in I would still get quite worked up about having needles in.

Since going to high school it has been hard to make sure all my teachers know what’s wrong with me and how to deal with things if I’m unwell as there are so many of them. My friends have always been there to help me but a lot of other people at school don’t really know what’s wrong with me and get confused when I’m walking one day and in a wheelchair the next. But I’m always willing to explain what’s going on even if it is a bit confusing.

It can be difficult catching up with work sometimes, especially when I have been off school for quite a long time. Over time I found ways around problems like this and learnt that having a bleeding condition couldn’t really stop me doing what I wanted to do as long as I knew my limitations – even if my haematologist didn’t really approve.

I still attend my dance class and have done things such as rock climbing, rollerblading and recently my bronze Duke of Edinburgh expedition. As long as I have plenty of factor and make sure I’m careful, I’m fine.

I have also improved with my phobia of needles and having needles is a lot easier than it used to be, even if I still use a port. My friends also know how to deal with things if I’m unwell and know how to make me feel better. If I can’t walk they will happily push me round in my wheelchair (which thankfully isn’t very often at the minute) or will happily visit me if I’m ever in hospital and keep me company.

I have learnt that you can’t really let a bleeding disorder stop you from doing what you want to do, and if not, there is always a way around things.

I have recently been nominated as the Youth Ambassador for the Yorkshire Bleeding Disorders Group and hope to connect with other young people through that.