Sharron Inglis is Vice-President, Haemophilia Foundation Victoria and has haemophilia A
The importance of peer support for women affected by bleeding disorders was a key finding in HFA’s consultation for The Female Factors Project. Often feeling isolated and as though they are the only ones with their experiences, women have found connecting and sharing stories to be immensely valuable and greatly empowering. As a way of supporting this, HFA is including personal stories from Australian women with the evidence-based information in all The Female Factors education materials. But how are local Foundations exploring peer support for women and what can we learn from their experiences?
This report from Haemophilia Foundation Victoria is the first in a series about local peer support for women from Australian State and Territory Foundations.
Whether we are women who have known about our bleeding disorder from a young age or a diagnosis has come at a time when a child or family member has been newly diagnosed, advocating for our own, sometimes unique, medical needs can be challenging.
My life story and experiences will be different to some of you, as I have known my factor VIII (8) levels have been low since I was three years old. My level of factor VIII at that time was 17%. My sister’s levels are also low and at a similar level to mine. My levels now sit around 40%, with the need to have treatment for most procedures.
My dad was known to have haemophilia. We think his mother had low factor levels due to her history, but she was never formally diagnosed. The testing when I was little wasn’t as advanced, so I couldn’t be tested until I was three. Mum and Dad wanted another child, but didn’t want to wait until after the testing. Hence, I was diagnosed as soon as I was able to have the test.
I was always keen to be more involved with Haemophilia Foundation Victoria (HFV) and women’s issues, but this didn’t happen until we moved closer to Melbourne and the kids were a bit older. My background is in nursing, with a more recent change in 2006 to sonography (ultrasound).
At the HFV camps and other peer support gatherings it was great to chat with others about our challenges with haemophilia, particularly women’s issues. Many were new to the thought process about women speaking up for their health and specific female issues with possible low factor levels. This spurred me on to become a member on the HFV committee and I am currently the Vice President. This role has really opened my eyes to the plight of women with bleeding disorders on an international level. I have been fortunate to attend national and international haemophilia conferences and recently presented at the Australian & New Zealand Conference on Haemophilia and Rare Bleeding Disorders, sharing a personal account of the impact of a bleeding disorder from a female perspective.
It was great to meet Suzanne at HFA and be involved with the development of the new The Female Factors material on women’s bleeding issues. After reading the first booklet, my mum cried. There was finally formal proof in writing to support the bleeding-related issues my sister and I have been through and are still challenged with, and the pain my parents felt with people not believing them. She said it was wonderful to see after over 40 years of fighting for us that there was finally recognition.
I have shown my friends and family the booklets, taken them to the doctors with me, shown other women within the bleeding disorder community, and left them in all the waiting rooms at my work place. One lady bought a copy into her appointment with me in ultrasound and said she had von Willebrand disease (VWD). She didn’t know I was the one who placed the booklet in the waiting room. She said, ‘this is me. I’m so glad to see something in writing I can show others”. Needless to say, I was thrilled that what could seem like a small amount of advocacy on my part could have such a positive impact on others and by sharing information we really can empower others.
I am very proud of the project to give women some recognition and formal information to show others, especially medical staff, so they can receive the correct care they deserve. The myths about women not being affected by haemophilia need to disappear. So, I truly thank all the others who contributed their time and stories for this booklet and urge other women to share their journey with a bleeding disorder in future booklets and magazines.
All our members at HFV received a copy of The Female Factors booklets. They have been a great talking point and provide an easy way to talk about the associated issues.
At HFV, we have an annual girl’s day out which allows all our ladies to let their hair down, get to know each other and bond over common issues. There is always a unique and interesting activity or venue. I encourage all women with bleeding disorders to attend these events or reach out to your local foundation or HFA – they can always connect you up with other women with similar journeys even if they don’t have specific programs for women.
Also, during our annual community camp we have a secret women’s business time out (child free) to have a nice time for a few hours. It brings up stories of people’s experiences as a female either directly or indirectly affected by a bleeding disorder. We often give one on one support to those who are struggling at the time. It is also an opportunity for women in our community to come together and put ideas into action. By the end of one of our camp two years ago, 6 of the mums had got together and formed a sub-committee to organise a ball! And what a ball it was, raising over $30,000 for our community programs. I am constantly amazed by the strength of the women in our communities.
Another area I find rewarding at HFV is the rural visits. We meet some amazing people who are a little more remote than us in Victoria. They often don’t get to Melbourne for specialist consultations or HFV events, so we do our best to travel to them. At one rural visit one of the youth said it was the first time he had met someone else with haemophilia. It’s amazing to chat to the ladies, mothers, daughters and grandmothers. They have some great stories, although some of them have not had much support outside their families. Some are not sure how to start looking into their own care. We cannot give medical advice, but can listen, tell our stories and point them in the right direction. It’s very rewarding.
Our men and boys are very important to us, but we need to be there for them, as healthy and informed women, who are strong enough to advocate for ourselves. As a mum, I know that if my Mum isn’t right (or well) the whole family suffers. When our boys move from paediatric care to the adult hospital, it is their time to start advocating for themselves. We can support this by advocating for ourselves and our future health as we age.
I am, of course, writing this from the perspective of a woman in a family with haemophilia. But we are also talking about bleeding disorders such as von Willebrand disease, as this has a big impact on many women’s lives. I have had the recent pleasure of getting to know a family affected by this disorder and look forward to their contributions and stories to increase the awareness and understanding of this closely related issue.
I look forward to the next exciting National Haemophilia magazine and future HFA publications and hearing other people’s stories, as we all have a different story to tell. Remember, we must advocate for ourselves and our families to the best of our ability and share the knowledge: knowledge is power.
Sign up for the latest news, events and our free National Haemophilia magazine