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March has arrived! This newsletter we feature International Women’s Day (and a fantastic event hosted by Dr Liane Khoo – be sure to register!), share the results of the Gene therapy snapshot survey, and remind you that your HTC loves to keep in contact.
If you struggle to keep track of your treatment, check out our MyABDR tips, and if you have a teen (or pre-teen) girl in the family, you’ll want to read Jaime Chase’s information on heavy menstrual bleeding.
Lastly, we have a reminder to participate in the PROBE Australia study. We are nearly there!
Do you follow us on social media? In February our most popular content was for Rare Disease Day. Check it out here.
As always, thanks for being part of our community.
International Women’s Day
This Saturday 8 March is International Women’s Day. Join us on our socials as we celebrate all women in the bleeding disorders community – whether they’re women with bleeding disorders or mums, partners, daughters, sisters, nurses, doctors, social workers or counsellors, physios, researchers, or carers. Thank you for being part of our community and advocating for us!
If you haven’t already, be sure to register for the Women with Bleeding Disorders Education Day on Friday 7 March. Hosted by Dr Liane Khoo and the HTC at RPA Hospital, the event can be attended online or in-person.
Why stay in contact with your HTC?
The team at your HTC loves to see or hear from you regularly. We asked health professionals and the Australian bleeding disorders community why you should stay in contact with your Haemophilia Treatment Centre (HTC).
‘When you stay in regular contact with your HTC, we can continue to build a strong community.’ – Dr Liane Khoo, HTC Director, Royal Prince Alfred Hospital.
Gene therapy snapshot survey
In May-June 2024 HFA conducted a short community survey to ask people affected by haemophilia about what they want from their treatment and their thoughts on gene therapy in particular.
With a range of new and innovative haemophilia treatments becoming available, it is important to understand what people with haemophilia and their parents, partners and family would like to see as outcomes of the treatment. What would result in a better quality of life for them?
MyABDR and recording your treatment
With new haemophilia treatments now available and more in the pipeline, recording treatment and bleeds in MyABDR is more important than ever.
Although people’s treatment experience has improved remarkably, the treatments have had unexpected results – ironically being more challenging for remembering to treat and record and managing treatment delivery.
Heavy menstrual bleeding in teens
Sometimes a period isn’t ‘just’ a period. Jaime Chase, Haemotology Clinical Nurse Specialist, shares guidance on heavy menstrual bleeding (HMB) in teenagers, and when to seek help.
‘Women with bleeding disorders often begin to experience bleeding concerns at puberty, which can potentially impair their activities as an adolescent. If a person with a bleeding disorder menstruates, bleeding problems can be a very regular occurrence from their adolescence and into adulthood.’
Help us reach our PROBE Study targets
We really appreciate the support our community has been giving to the PROBE Australia Study. This is a very important study for the bleeding disorders community and a big project! We have been recruiting for the last year or so – but we are not quite finished.
We still need
• about 95 people WITHOUT a bleeding disorder – particularly men
• about 50 people with haemophilia – both men and women
Why do we want data from people without a bleeding disorder? It’s simple. For the data to be meaningful, it needs to be able to compare the lives of people WITH haemophilia and WITHOUT a bleeding disorder.
Please consider sharing the study with your friends and extended family.
