The Haemophilia Scotland Women’s Group brings women affected by bleeding disorders together to exchange information and support one another.
Since its formation the group has focused on building a strong sense of community and giving women affected by bleeding disorders in Scotland the opportunity to meet and get to know one another.
Our recent projects have included a Women’s Conference in Stirling and online art workshops. We have also produced a quilt reflecting the experiences of women in Scotland and around the world of living with a bleeding disorder. The quilt was unveiled at the Women’s Booth that the Women’s Group hosted at the Word Federation of Hemophilia (WFH) 2018 Congress in Glasgow. The quilt was displayed with the stories of the women who created it and those visiting the booth were given the opportunity to add a leaf to the tree in its central panel.
The Women’s Booth itself was first created by MyGirlsBlood at the WFH 2016 Congress in Orlando. The Haemophilia Scotland Women’s Group were honoured to be invited to host the Booth in Glasgow. The booth provides a meeting point for women to come together and discuss the issues raised by the wider conference as well as providing information from around the world. In Glasgow the booth activities included book signings, quilting and crafting, doll making, red lips, and facilitated group discussions.
The 2018 conference also saw the final additions made to our fantastic Women’s Quilt. Those standing up for women with bleeding disorders across Scotland and around the world have worked together to produce the Women’s Quilt. Those visiting the Women’s Booth were invited to add a leaf to the tree which makes up the central motif. Our amazing volunteers are now working to finish the quilt before it is next displayed. Read more about the launch of the quilt and the work that went into it.
Many older medical textbooks say that Haemophilia and bleeding disorders only affect men. These days Haemophilia specialists recognise that bleeding disorders effect women too. However, old assumptions can take time to break down so raising awareness that bleeding disorders can effectt women is an important part of our work.
There is also a lot of debate at the moment about the need to treat more women prophylacticly with clotting factor products. Some clinicians feel that there has been too much acceptance of heavy menstrual bleeding (Menorrhagia). They are asking whether this is treated with the same seriousness as bleeds into joints or tissue. You can find out more about this debate in our report from the EHC Roundtable Meeting on von Willebrand Disease.
If you would like to get involved with the Women’s Group, please email women@haemophilia.scot
There are several different groups of women who have issues with bleeding as a result of having a bleeding disorder.
Women with von Willebrands (vW)
vW is just as likely to affect men as women. However, it is often women who experience the biggest impact on their life from having the condition. You can find out more about the condition on our von Willebrand page.
Women with Haemophilia
Women with low clotting factor levels used to be called “symptomatic carriers” as they are often the mothers of boys with severe Haemophilia. However, more and more women now use the same terminology as would be used for a man with the same clotting levels – often describing themselves as having mild or moderate Haemophilia.
Diagnosis
If you think you might have a bleeding disorder then this self-administered bleeding assessment tool from Let’s Talk Period may be helpful.
Support
Facebook:
We have a closed group on Facebook for women affected by a bleeding disorder to reach out to other women and offer advice and support to one another.
Helpful links:
- Where’s Mary? Girls and Bleeding Disorders: Symptoms, Diagnosis and Treatment Haemophilia Scotland has adapted a very helpful Swedish resource for the Scottish context.
- A blood loss assessment chart to determine whether your menstruation can be considered heavy.
- EmBody to EmPower: A resource for young women about accessing healthcare in Scotland. Produced by The Young Women’s Movement.
- Victoryforwomen.org is part of Victory for Women which is National Hemophilia Foundation’s health initiative that creates and provides support, education and resources for women and providers in the bleeding disorders community. The main goal is to address critical issues and ultimately improve quality of life for women in the community. The Women Bleed Too! Toolkit has also been produced by the Hemophilia Federation of America.
- The Swedish Haemophilia Society have produced some excellent resources about bleeding disorders in women and girls. You can find out more at their Blödarsjuka website.
- The Canadian Haemophilia Society have an extremely useful website called Code Rouge. Their slogan is “When women bleed too much.”
- Women Who Bleed was created by Chloe and Jenna (My Missing Factor), who met in 2015 after connecting on Facebook over a shared diagnosis of Von Willebrand Disease.
- The Irish Haemophilia Society have produced a useful booklet called Women and Bleeding Disorders.
- The Haemophilia Society (UK) do awareness raising work through the Talking Red campaign.