Men are exposed to bleeding disorders and they experience this from different perspectives. They might be young men living with a bleeding disorder. They may be new dads with a recently diagnosed child or the partner of a woman with an older family member living with a bleeding disorder. They may also be an adult male living with a bleeding disorder and trying to fit it into a busy life working and living in a community with little experience of people with bleeding disorders. Regardless of your circumstance if you are a man affected by a bleeding disorder we may have a support group for you.
Haemophilia, considered the most severe bleeding disorder, affects mostly males. As little as a generation ago the treatment possibilities were minimal and many of our older members are surviving and thriving under the new factor replacement therapies but some are experiencing side effects and complications from less than optimal treatment when they were younger. Others are finding their body is aging and they need to adjust their responses to the things life throws at them.
Our young men have lived with good treatment options but some are dealing with inhibitors and many feel isolated and unable to engage with some of the activates that young men like to do. We have a youth mentor program and offer youth activities that you can engage with and we can also connect you one on one with another young person who has had similar experiences. HFQ also has educational materials for young men with von Willebrand Disease and for Haemophilia A & B.
For those older men now experiencing middle age or ageing we have a monthly support group that we call OBE’s. It used to be an award the queen gave for outstanding service and contribution to society and living with and surviving a bleeding disorder entitles you to a gong. Some men have jokingly put words to the acronym and named it Old Boys Essentially but it’s not just for old men. If you’re working or have worked and want the chance to catch up with other adult men and share a meal or want to engage with a specialist on life matters this is the group for you.
OBE’s is run by the members for themselves, it offers fun, friendship and people to listen, understand and offer support, as well as enabling men to share their views and experiences.
It meets on the first Wednesday of each month in SE Queensland and there is a speaker on different topics who attend every other meeting. This is an opportunity to learn more about things that impact you be it health related or otherwise and the speakers stay for lunch so you can engage them one on one if you want to.
Each group chooses their own priorities and focus, and activities may include:
- Raising public awareness of bleeding disorders
- Information on new treatment and health options
- Social events and regional outings
- Working with local haemophilia centres to improve care and treatment
- Raising funds for local community activities, HFQ and the Queensland Haemophilia Centres