Living with haemophilia: ‘LOSP’ from London, UK

Name: LOSP

Age: 35.

City and country: London, UK.

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

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

Is there anyone else in your family who suffers from haemophilia? If yes what is your relationship with them?

My uncle, but he lives in Bangkok so I only see him once or twice a year. We talk about it, but prefer talking about wine. My grandmother on my mum’s side was the carrier, and then my mum, and I don’t have any siblings.

When were you diagnosed?

I was diagnosed when I was a baby, very early, because my mum knew she was a carrier. I think I was about 6 months old.  My earliest memory of knowing I had haemophilia was when I was 3 or 4 and had to go to hospital because I had a bleed in my mouth.

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?

Haemophilia has affected my day-to-day life – I don’t play any sports, even though I used to love sports when I was younger. I used to love running too, but don’t do it now as the risk of getting a bleed is too high. I go to the gym a little but I am terrified of getting injured – I was in hospital for a month last year after getting a spontaneous bleed in my back whilst running. I do a bit of cycling, but really I can’t afford to get injured now.

What treatment are you on now?

I take Hex Gen and factor VIII and if I get a bit of a knock then I’ll treat myself with DDAVP which is intra-muscular with less faffing about so I do a mixture. I don’t take anything unless I have to – I try to look after myself and avoid injury. I try to avoid taking factor VIII after the contaminated blood scandal and the patients that contracted Hepatitis C from it. When I was younger if I injected regularly after activities then I could play football, but it’s horrible, it’s not something I really want to have to do.

How is your access to healthcare? Do you think you have enough support from the government of the UK and the NHS?

Every single person in the NHS has been amazing. Because I work all over the place I’m actually signed up to three different haematology centres depending on where I am but my main one is at Hammersmith.

Are you happy with the progress in the treatments for haemophilia? Do you see any improvements within the last few years?

I don’t actively seek out new information about haemophilia. I’m a member of a few different haemophiliac groups and if anything comes up on there then I’ll read it, but most of my interest is around hep c and contaminated blood, I wouldn’t really go and search for anything else. 

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

For me the most important thing is that I don’t want anyone else to get infected with anything like what happened in the 80s, I’m reassured by the way Factor is now manufactured however the scars of the 80’s contamination run deep. The future for me is just about taking care of myself, and avoiding getting hurt. If you offered me a pill today that you said would get rid of it, I wouldn’t take it. I’ve lived it with it my whole life, and it’s me and who I am, and I wouldn’t change that for the world.

Haemophilia is not a visible condition, and that makes it difficult. I try and tell everyone because I need to know that if something happened, the people around me know what to do. When I’m in a crowded space I’m very conscious of other people and nervous about them standing on my feet or getting pushed. What the general public aren’t aware of is how their behaviour might impact on a haemophiliac, and how quickly you can go from being fine, to being in trouble.

 Quite often people don’t even know what haemophilia is. I don’t expect them to know everything, that’s unrealistic, but often they don’t understand why I feel nervous in crowded spaces and want to get out of the situation. Without having to wear a flashing hat, I just wish people around me could be a bit more empathetic, it’s very hard to explain just how vulnerable you feel; even my own friends grabbing me, and I find that really hard to articulate to people without sounding like a hypochondriac.

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