Success at Talking Red Live

Written by Jessica Bomford, March 24, 2022

Talking Red Live in York in early March brought together women with bleeding disorders from around the country, and proved to be a fantastic, informative and inspiring day for everyone there.

Participants came to the event for all kinds of reasons – one lady was newly diagnosed as a carrier of the haemophilia gene and wanted to find out more. Someone else had just had a baby and was keen to share her experiences, two women with haemophilia arrived, hoping to meet another female with the same condition for the first time in their lives. They did! There were also women present with von Willebrand Disorder, also known as von Willebrand Disease and factor VII deficiency.

Our Talking Red events always have a family feel, with mothers and daughters as well as sisters attending together. We were also very happy to welcome a few male partners who were keen gain knowledge so they could offer more informed support.

Talking Red is about sharing experiences, listening and learning from others. Living with a rare condition can be very isolating, so having the chance to meet in person for a relaxed chat was very important for everyone there.

Hannah, who is a carrier of the haemophilia gene, wanted to get more insight into what care is available for her and her new baby, and was able to talk to a number of experts and other women about the options open to her.  She said: ‘I feel so much better, having come to Talking Red. It is a really powerful event.’

We were very grateful to be joined by leading gynaecologist, Dr Diana Mansour who is consultant in community gynaecology and reproductive health care in Newcastle who talked to us about managing heavy menstrual bleeding. Later, Dr Ozlem Turan, senior registrar in obstetrics and gynaecology at the Royal Free Hospital in London gave advice about how to manage pregnancy for women with an inherited bleeding disorder.

There were also lively discussions about individual experiences of diagnosis and care as well as dealing with the psychological impact of bleeding disorders, coping with bleeding in the workplace and navigating the menopause.

The event was also attended by a number of our trustees, youth ambassadors, clinical advisers and, of course, our Talking Red Ambassador, Lynn Wild, who has been involved in raising awareness about women and bleeding disorders for many years. We thank all our volunteers who gave up their time so willingly to make Talking Red Live such a success.