Member’s Stories

You can read the stories that some of our members have shared below. They highlight how varied everyone’s experience of living with a bleeding disorder can be, depending on their condition and how severe it is, and the local care and treatment available to them. You will also see how much care and treatment has changed over the years. To find out more about this, or any of the issues raised here contact us.

No one person’s experience is the same, but whatever your situation, we’re here to support you through the good times and the tough times. Our resources pages might be a helpful place to start.

Thank you to everyone who has shared their experiences here, it sometimes really helps to hear how other people have managed their condition. If you’d like to share your story too, confidentially if you’d prefer, please contact us.

Lynsey and Joseph

People can understandably find it really difficult when they are given a haemophilia diagnosis, and worry that it’s…
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Mardin’s Story

My name is Mardin, and I am 25 years old. I am from Iraq. I…
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Gemma’s Story

Caring for someone living with a bleeding disorder in lockdown has taught me that the…
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Sunny’s Story

My name is Sunny and I suffer from severe Von Willebrand Type 3. Generally, lockdown…
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Dana’s Story

I am a carrier of Severe haemophilia A and have mild haemophilia myself, we live…
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Karen’s Story

Living with a bleeding disorder in lockdown has taught me that it shouldn’t be any…
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Rosie’s Story

Living through lockdown caring for someone with a bleeding disorder wasn’t easy. In the back…
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Carly’s story

Caring for someone with a bleeding disorder during the pandemic has taught me….that even when…
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Ellen’s Story

The Haemophilia Society matters to me because they make you feel part of a community…
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Lesley’s Story

The Haemophilia Society matters to me because I know there’s other people just like me….
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Nicola’s Story

We’re joining Team 70! Nicola and her family will be taking up the 7.0 fundraising…
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Simona’s Story

The Haemophilia Society matters to me because….it’s really helpful to know that someone is actually…
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Jodie’s Story

When we attended the newly diagnosed family weekend in Longleat in 2018 Thomas was 9…
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Susan’s Story

It gave my husband and I help, hope and understanding at a time when there…
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Donna’s Story

The Haemophilia Society has been there for myself and my son since he was born…
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Bill’s Story

Bill Payne was born the same year The Haemophilia Society was created and remained loyal…
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Keith’s Story

Keith Colthorpe has lived with severe haemophilia all his life – yet thanks to a…
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Bailey’s Story

Hi, I am Bailey and I have severe haemophilia A. During my childhood, I was…
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Hannah’s Story

For over 25 years the society has provided my family with support. From my brother’s…
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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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Matty’s Story

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

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