Josh’s Story

Hi, I’m Josh.

I live in Newcastle in the North of England and I have severe haemophilia A and an inhibitor which I’ve had all my life. 

I’m also a renewable energy specialist at Gateshead council, a keen traveller, a foodie and sometimes on special occasions I even think I can be quite funny! I enjoy working with the Haemophilia Society and with other national member organisations as for a significant portion of my life they have been around to help me and my family when I needed it.

A big part of why my family and I joined the Haemophilia Society was because I was starting to realise I was different from other children my age at school. I was never quite sure what I couldn’t do when playing and socialising with people my age. I also think they were also more than happy to talk and hang out with me but they were also not fully sure what I could and couldn’t do either. This led to me not being as involved as I now realise I could’ve been in social circles, unfortunately this led to some feelings of isolation.

We decided to join the Haemophilia Society. This was an enormous turning point in my life.

These feelings were difficult to understand as a kid, I had known I was different due to crutches and wheelchairs being difficult to hide but I’d never felt socially isolated before. It certainly knocked my confidence, feelings which I carried for a while and resulted in some difficult years going through different schools, having to lose and make new friends constantly. In hindsight it made me very good at talking with new people but struggling with maintaining long-term friendships as I had gotten used to moving out of their lives so didn’t form deep friendships as it stung when I moved to a new school and fell out of contact with previous friends. Fortunately, I had made a group of very close friends early on in life before school started who I’ve stayed in touch with to this day despite geographical and scheduling differences. It was absolutely these friendships that helped me keep away the worse feelings of isolation.

For a long time I struggled to meet people like me. Attempts were made at haemophilia clinics but when you’re all trapped in a windowless waiting room the last thing anyone wants is a meet and greet about something that can be deeply personal. Naturally meeting people at random with a rare bleeding disorder is unlikely and hasn’t happened to me yet but when it does I’ll buy a lottery ticket as well. 

This meant the best way for me to feel less isolated in my condition was to go to events specifically for people with haemophilia. We decided to join the Haemophilia society. This was an enormous turning point in my life. Even though within the bleeding disorders community there is a wide variation in the life experiences. I, for instance, was very aware that even in a group of people with haemophilia there were still very few to no inhibitor patients. Talking about treatment was awkward in these circles as people would name treatments I knew I could never use as at the time the options were extremely limited for inhibitor patients.

This, however was a tiny concern in the grand scheme of things, as I finally was able to be among people who knew instantly the same issues I was worried about. From the serious problems like joint pain, school, treatment options and so on to the less serious but equally important issues like how to pull a wheelie in a wheelchair (much to the horror of parents) or what response we had when people asked about paper cuts. It was deeply refreshing and encouraging to go to these meetings and I found that once I started attending I gained back some of the confidence I had lost earlier in life to feelings of isolation. 

Without finding the community I did when I joined the Haemophilia Society I’m not sure I’d have had the confidence to take the steps to improving my life so dramatically.

I personally can’t stress enough how much finding like-minded people within the community helped me eliminate feelings of isolation from my life. I would recommend it to anyone who is considering it as it not only helps with gaining information on the condition itself but understanding that there are other people going through what you are was so important to my mental health growing up and to this day. 

The second massive turning point for me in terms of isolation was after a long wait and no small amount of pestering my consultant, I was put onto the treatment that changed my life, Emicizumab. After the first treatment, my life took a massively positive change overnight. The bleeds stopped, the pain went away for the most part and I felt I could be properly excited about moving to university and starting a new chapter in life.

Without finding the community I did when I joined the Haemophilia Society I’m not sure I’d have had the confidence to take the steps to improving my life so dramatically. I wouldn’t have known about Emicizumab, and how to ask it. Isolation would also have remained an issue in my life as until joining the society I was the only person I knew with a bleeding disorder but now I know 100’s of people who can share similar experiences and most importantly I now know 100’s of ways to say I won’t die from a paper cut.