Living with haemophilia: ‘FK’ from Birmingham, UK

Name: FK.

Age: 45.

City and country: Birmingham, UK.

What type of haemophilia do you suffer from? Haemophilia A.

What is the severity of your condition: severe, moderate or mild? Severe.

Is there anyone else in your family who suffers from haemophilia?

My nephew and my brother also have the condition.

When were you diagnosed?

I was diagnosed when I was born, but my earliest memory was when I was about three years old and had bleeding to the joint in my knee and was hospitalised.

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 life style that you would consider better.

I have a lot of pain, and when I was at school I had a lot of time off school.

What treatment are you on now?

I’m currently on ELOCTA which is a new treatment. I’ve been on it for about three months, and it’s the first time I’ve been on prophylaxis treatment, this is the first time in my life. I had treatment before but I’ve never had regular treatment, but my ankles have been hurting a lot, so the doctor suggested going on regular treatment to help prevent any bleeds. Before that I’ve only needed to have injections in response to bleeds. When I was a child prophylaxis treatment wasn’t available so I’d just go to hospital for treatment. In 2009 I broke my leg, and I’ve also had two operations which I needed treatment for, but most of the time it’s been spontaneous bleeds, but has mostly been manageable.

How would you evaluate your relationship with your physician(s)? How important it is for you to have a good relationship with them?

I’ve been with the same doctor since I was a child but he retired last year. I think it’s important to have a good relationship with them, and I feel like I can ask questions and get support. I have asked the hospital to put my name down for the second phase of the Biomarck clinical trial, I think it’s taking place from December.  

Are you part of any support groups? If yes, what are your main activities and how does that help you?

I’m a member of The Haemophilia Society, and call them if I have questions, like recently on the new gene therapy that is coming out.

What do you hope for yourself and others who have haemophilia? How do you see the future for haemophilia patients?

For the future, I hope that gene therapy treatment is effective and that everyone can take advantage of that and not have to do injections any more.  

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