Members Stories

These pages document some of our members’ own stories from around the UK. They highlight a variety of experiences depending on the condition they have, how severe it is, and the care and treatment available.

It’s difficult to generalise on the impact that bleeding disorders have on people’s lives. Whatever your situation, we’re here to support you through the good times and the tough times.

When reading these stories, please remember how much care and treatment has changed in recent years. To find out more about this, or any of the issues raised here contact us.

Thanks to those who have shared their experiences here. If you’d be happy to tell your story (we’ll keep your identity confidential if you wish), please contact us.

Joseph’s Story

‘Haemophilia treatment is safe and really effective now, so why are you still campaigning?’ Hi,…
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Sam’s story

My name is Kerry. Before September 2018, I had absolutely no idea I was a…
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Paul’s Story

On 4 February 2001 I was born, as a known carrier my mum knew there…
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Ethan’s story

My name is Ethan and I am 19 years old. I was born with severe…
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Matt’s Story

Matt, 21, has been a Youth Ambassador for the Haemophilia Society for two years. Growing…
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Archie’s story

Archie is 7 and is severe A. He had a port fitted at ten months…
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Natasha’s story

Natasha, Gary and their four-month-old son Alexanderattended one of the Haemophilia Society’s regular Newly Diagnosed…
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Jamie’s story

Jamie tells his father’s story to help raise awareness of sharing your condition with your…
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Zoe’s story

Hello, my name is Zoe, I am 15 years old and at the age of…
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Steve’s Story

Hi, I’m Steve, I have haemophilia A and was diagnosed as a baby. I’m in…
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Ed’s Story

My name’s Ed, now in my 30s, I have severe haemophilia A, diagnosed when I…
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Alan’s story

A rally good time! My name is Alan, and one night in September last year…
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Hannah’s story

My Dad has haemophilia, so when I became pregnant with my first son, Cassius, in…
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Henry’s story

EHL trial treatment – a ‘no-brainer’ for young Henry I’m Sara Jane and my son…
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Maryam’s story

I’m a 37-year-old woman from the Muslim Pakistani community in the West Midlands. I was…
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Nick’s Story

Nick Latimer wins duathlon silver! I’m Nick Latimer, and in April I competed for Great…
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Ben’s Story

1 st Haemophiliac competes in the gruelling Clipper Round the World Yacht Race I’m Ben, I have…
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Paul’s Story

My name is Paul and I’ve had haemophilia since birth. In many ways it’s an…
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