City and country: Hitchin, UK.
What type of haemophilia do you suffer from? Type B.
What is the severity of your condition: severe, moderate or mild? Severe.
When were you diagnosed?
As a baby, but my first awareness of having haemophilia was at the age of 2 when I had an accident on a pushbike and I injured my mouth. That was the first time I was aware that there was a problem, as I was hospitalised for a few weeks.
How would you say having haemophilia has affected your daily life? To what extend do you think that having haemophilia has stopped you from having a lifestyle that you would consider better?
I wouldn’t say, on the whole, that it has negatively impacted my life – as I couldn’t play rugby and football when I was younger, it meant that I concentrated on music which has given me a lot of pleasure. I learnt to play the drums, guitar, sing and to act. Those skills have shaped my social life ever since, so I wouldn’t say it’s negatively impacted me. I don’t think that I would have acted or played music if I didn’t have haemophilia.
I have to inject myself on a regular basis, which is in the back of my mind on most days, as I sometimes miss a vein, which is painful and frustrating. It would be nice not to have to inject myself, but I am used to it.
The biggest negative has been that I contracted hepatitis C, which I realised I had when I was about 19. Since then I’ve had to have 3 liver biopsies, which were unpleasant and meant that I had to stay in hospital for a few days at a time. Having hepatitis C has affected relationships I was forming with girls as I obviously had to tell them that I had hep C, which I felt was a problem. As a young man it was difficult telling girls that I had a potentially life threatening liver condition, which, in theory, I could infect them with. Everything changed when I met my wife about ten years ago, as she knew I had hepatitis C before we started dating. I didn’t know that she knew, but when we had a discussion about it, I felt a huge sense of relief and I felt as though I could finally have an honest and open relationship. Between my twenties and thirties though, it felt like I was carrying a burden.
What treatment are you on now?
At the moment I’m taking a drug called Alprolix which is a new treatment, and it’s the best treatment I’ve used by far as I inject myself once a fortnight, as opposed to twice a week. It started off as a medical trial that I was referred to via my haemophilia centre, so I’ve been on it for about five years, with excellent results. This has changed things significantly and I haven’t had a major bleed whilst I’ve been taking it.
Are you part of any support groups? If yes, what are your main activities and how does that help you?
I get a lot of support from the haemophilia centre I attend at Addenbrooke’s, and so haven’t joined any patient support groups, although I did recently join the Haemophilia Society. I joined as I’m very interested in the government’s investigation into the use of contaminated blood and the society provides an excellent way of keeping up to date with all of the developments.
Are you happy with the progress in the treatments for haemophilia? Do you see any improvements within the last few years?
I feel very positive about developments in haemophilia treatment. I’m hopeful that I will be invited to participate in a new gene therapy treatment trial which could result in an effective cure. I know that progress is being made, which is reassuring. This is important to me, as my daughter will have a 50% chance of passing haemophilia on to her sons. This was something my wife and I discussed with the hospital before she was pregnant, and we were told that having haemophilia now is nothing like when I was a child, which gave us a lot of hope.
What do you hope for yourself and others who have haemophilia? How do you see the future for haemophilia patients?
I hope that people with haemophilia who received contaminated blood get the justice they deserve and that, if it proved there was a “cover up”, the people responsible are made accountable for their actions.
I think that in the future, people with haemophilia will experience less joint damage than I did, as treatments evolve for the better. Also, while gene therapy won’t stop people from having the disease, it should mean that those who are affected at birth receive an effective cure early on, meaning that they will ultimately not be affected and will lead a normal life without regular injections.