The Female Factors
Have you been waiting for information about bleeding disorders for women and girls?
We are pleased to announce that the first HFA The Female Factors resource is now available – an introductory booklet called A snapshot of bleeding disorders in females.
- Order copies from HFA – email firstname.lastname@example.org
- Are you on the mailing list for a print copy of National Haemophilia? The SNAPSHOT is an insert in the June 2016 issue
- Download a copy from the HFA website
- There will also be copies available from your local Haemophilia Foundation and Haemophilia Centre
WHAT IS THE FEMALE FACTORS?
The Female Factors is the HFA women and girls project. The project is developing specific information resources for Australian women and girls affected by bleeding disorders to:
- Increase their understanding of their bleeding disorder, treatments and strategies to manage it
- Help them to feel more connected with each other by sharing personal stories and tips with others in similar situations
- Develop high quality, evidence-based information that they can show to other doctors, nurses, etc who provide their care.
Next, there will be a series of more detailed information resources on specific topics. They will include personal stories and tips. One suite is targeted at adult women and the other is for young women and teenage girls. The resources cover:
- Haemophilia: carrying the gene
- Living with a bleeding disorder from a female perspective
WHY THE NEED?
What are the experiences of women and girls affected by bleeding disorders?
HFA’s consultation has found that many have been treated in the community, for example, by a GP rather than a Haemophilia Centre. However, most doctors have not received training about managing bleeding disorders. As a result many women have had problems with diagnosis and referral, and had bleeding problems with surgery, medical and dental procedures, with menstruation (periods) and after childbirth. Many women also spoke about their difficulties in being ‘taken seriously’ by health professionals, as some of their treating doctors held the belief that women cannot have a bleeding disorder. This is similar to the experience of women with bleeding disorders in other developed countries such as Canada. (1,2)
For these women, feelings of isolation are common.
WANT TO BE INVOLVED?
You can contribute to the project by joining the HFA women and girls review groups:
- Tell your story and have it included in the new resources – it can be anonymous if you prefer – and you can write your story yourself or be interviewed over the phone
- And/or comment on the draft resources.
Women - contact Suzanne at HFA on email@example.com
Young women and girls (13-25 yrs) – contact Hannah at HFA on firstname.lastname@example.org
Or phone 1800 807 173.
1.Haemophilia Foundation Australia. Women and bleeding disorders project report. Unpublished report, Melbourne, 2002.
2.Renault, NK, Howell, RE, Robinson, S, et al. Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care. Haemophilia 2011;17:237-245.
Date last reviewed: 24 June 2016