Members’ 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.
Elliott’s Story
‘I had gene therapy five years ago – and haven’t had a bleed since’ Thanks…Read more
Joey’s triple fund-raising inspirations
Three very special people with bleeding disorders inspired Joey Beavis’ insane fundraising challenge of walking…Read more
Henry’s Story
Carreen, from Surrey, got in touch with THS to let us know that activities from…Read more
Craig’s Story
Craig Wheeler, 31, is the current Mayor of Thrapston, near Kettering. We are delighted that…Read more
Richard’s Story
Throughout his life, he has occasionally felt isolated due to his condition. “For me this…Read more
Carly and Nick Warren
Wonderful Warrens Carly and Nick Warren talk about their youngest daughter Ella and their journey…Read more
Glanzmann’s: A Parent’s Journey
Written by Annette Kellow, mum to Felix, 3 When my son Felix was born he…Read more
Lynsey and Joseph
People can understandably find it really difficult when they are given a haemophilia diagnosis, and worry that it’s…Read more
Gemma’s Story
Caring for someone living with a bleeding disorder in lockdown has taught me that the…Read more
Sunny’s Story
My name is Sunny and I suffer from severe Von Willebrand Type 3. Generally, lockdown…Read more
Dana’s Story
I am a carrier of Severe haemophilia A and have mild haemophilia myself, we live…Read more
Karen’s Story
Living with a bleeding disorder in lockdown has taught me that it shouldn’t be any…Read more
Rosie’s Story
Living through lockdown caring for someone with a bleeding disorder wasn’t easy. In the back…Read more
Carly’s story
Caring for someone with a bleeding disorder during the pandemic has taught me….that even when…Read more
Ellen’s Story
The Haemophilia Society matters to me because they make you feel part of a community…Read more
Lesley’s Story
The Haemophilia Society matters to me because I know there’s other people just like me….Read more
Nicola’s Story
We’re joining Team 70! Nicola and her family will be taking up the 7.0 fundraising…Read more
Simona’s Story
The Haemophilia Society matters to me because….it’s really helpful to know that someone is actually…Read more
Jodie’s Story
When we attended the newly diagnosed family weekend in Longleat in 2018 Thomas was 9…Read more
Donna’s Story
The Haemophilia Society has been there for myself and my son since he was born…Read more
Bill’s Story
Bill Payne was born the same year The Haemophilia Society was created and remained loyal…Read more
Keith’s Story
Keith Colthorpe has lived with severe haemophilia all his life – yet thanks to a…Read more
Bailey’s Story
Hi, I am Bailey and I have severe haemophilia A. During my childhood, I was…Read more
Hannah’s Story
For over 25 years the society has provided my family with support. From my brother’s…Read more
Matty’s Story
Matt, 21, has been a Youth Ambassador for the Haemophilia Society for two years. Growing…Read more
Ben’s Story
1 st Haemophiliac competes in the gruelling Clipper Round the World Yacht Race I’m Ben, I have…Read more