Finding out you carry the gene for haemophilia can raise a lot of different feelings, even in women and girls who suspected they might carry the gene.
HFA’s new booklet Haemophilia: Finding out you carry the gene explores the responses of Australian women and girls. It covers:
“It wasn’t any great surprise – this just became a bit more information to help with decisions.”
“When I was diagnosed I felt gutted.”
“I found out that I carried the gene when I was 12 weeks pregnant. The stress was enormous as I had to make some important decisions fast.”
The booklet topics and content were developed from the suggestions and feedback of the HFA Women’s Consumer and Health Professional Review Groups. These are volunteers, and include women who carry the gene and specialist health professionals, and we appreciate their time and expert advice greatly.
Quotes and personal stories contributed by Australian women who carry the gene form a very important aspect of the booklet. These acknowledge the varied experience of women and girls when they are diagnosed and the very strong impact that diagnosis can have. For the women who were involved in the booklet, sharing personal experiences is a powerful way of supporting each other and the wider community of women and girls who carry the gene. They were keen to share the message that women in this situation are not alone; and told their story and outlined the strategies they used to manage their diagnosis in the hope that it might be of value to other women. Our sincere thanks to these women for their generosity in sharing their experiences.
The booklet was launched by HFA on 11 April 2017 as part of the international World Haemophilia Day Hear Their Voices campaign, which aimed to show support for the millions of women and girls affected by bleeding disorders.
This booklet is part of the suite of resources that will be published in the HFA The Female Factors project. Other resources cover:
And in development:
For more information about the HFA The Female Factors project, contact HFA:
Suzanne O'Callaghan (adult women) – firstname.lastname@example.org
Hannah Opeskin (young women/teenage girls) – email@example.com
T: 1800 807 173
Sign up for the latest news, events and our free National Haemophilia magazine