Dorothy’s Story

Dorothy was in her eighth decade when she was diagnosed with von Willebrand Disease and factor XI deficiency.  

She has spent a lifetime with the condition, but only became aware of it following tests before double knee surgery and, later, had complications after a hernia operation. 

The diagnosis was not a total surprise – her daughter had been diagnosed with VWD at the age of 14 after nearly bleeding to death following an operation to remove her tonsils. At the time, both Dorothy and her husband were told they did not have the gene. One of her granddaughters also has the bleeding disorder.  

Dorothy, 94, is speaking out to highlight The Haemophilia Society’s Talking Red campaign which raises awareness about women’s bleeding disorders. A free Talking Red one-day conference will take place in York on 14 March.  

Although Dorothy is living in a retirement village, which she had hoped would have good healthcare links for older people, she has been appalled at the lack of access she has had to both a regular GP and her haemophilia centre.  

She was left to contact her haemophilia centre, which is a long journey from her home in Gloucestershire and has no monitoring from specialists there.  

Dorothy said: “There’s a breakdown of health services. What is so sad about our society is that knowledge doesn’t always get translated into better practice. There is terrible ageism in our health service – and elsewhere in society. I am a 94-year-old woman with 14 prescriptions, a bleeding disorder, partially sighted and profoundly deaf. What GP would want me?”  

She continues to campaign about improving healthcare and services for the elderly. She said: “It is important to talk about our experiences for medical purposes. If we all said we couldn’t talk about it, we’d never get anywhere.”  

Born in 1925, Dorothy saw active service in World War Two when she worked as a Wren servicing air communication on aircraft. When the war finished, she was 21 and amazed to be offered a place at university – a highly unusual opportunity for a woman in the 1940s.  After graduation she became a social worker and spent her professional life working to improve social policy, later gaining a master’s degree and travelling abroad for research projects.   

Her daughter’s VWD diagnosis in 1970s was a difficult time for Dorothy and her family. She said: “It’s been a rocky pathway. There was no understanding of why my daughter nearly bled to death. They couldn’t understand why it was happening. They told me they’d never had this problem before in a woman.  

“I felt very guilty that I had caused my daughter and then granddaughter to inherit this faulty gene.”  

Dorothy has other health complications, most unrelated to her VWD, but she says she will always wonder whether some of her health problems were made worse by her undiagnosed bleeding disorder.  

Although she has less energy than a few decades ago, Dorothy is determined to keep campaigning on the issues she is passionate about. She said: “I fought sexism through my early life and for many years have also tried to highlight ageism. Sometimes when I look at the world now, I feel we have failed, although much progress has been made. 

“It is up to the younger generations to continue campaigning. They’re our hope now.”  

Book your place on The Haemophilia Society’s free one day Talking Red conference in York on Saturday, 14 March today.