Photo right: The Australian Haemophilia Nurses Group 2015
Robyn Shoemark is Clinical Nurse Consultant, Haemophilia – the Children’s Hospital at Westmead
When I reflected on my time at the Conference I realised what a great relationship there is within the bleeding disorder community, health care professionals and the pharmaceutical companies. The Conference theme of Facing the Future Together was evident for those attending.
For all of the health professionals, things kicked off on Thursday with their annual face to face meetings. The Australian Haemophilia Nurses Group (AHNG) met for their yearly meeting with elections of the new Co-Chairs, Penny McCarthy and Anne Jackson, followed by updating terms of reference, completing the yearly objectives report and discussions with the National Blood Authority and HFA.
With an early start on Friday morning, breakfast meetings for some, the Conference was officially opened by Gavin Finkelstein, HFA President.
Von Willebrand disease
Chair: Dr Catherine Harris
Personal Stories: Bobby, ACT; Sally, NSW
Diagnosis and testing – Dr Ritam Prasad
Treatment and Management – Dr Susan Russell
For many, von Willebrand disease (VWD) is often seen as the little cousin in the bleeding world of haemophilia, sometimes misdiagnosed or only seen as a mild bleeding disorder. This session informed the delegates about the diagnosis, testing, treatment and management and what it is like to have or live with VWD in the family.
The session opened with Bobby sharing her life story. In a wonderfully animated presentation, Bobby walked us through her life with VWD. From the agonising teenage years through to her life today, Bobby has had many obstacles and managed to overcome them all. She talked about the trials of menstruation, wisdom teeth extractions and about her journey to wanting to start her own family. Through all of that came her ‘wonder drugs’, as she called them, that helped her manage her bleeding symptoms to become the woman she is today.
Next, Sally, who is the mother of a young daughter with Type 3 VWD, shared her story with us. She told it from her perspective: what it was like to have the diagnosis for her daughter and what this meant for them as a family. Her daughter is now in the process of learning self-infusion and starting her own journey with VWD.
In the rest of the session Ritam Prasad covered diagnosis and testing, which helped us all to understand the science and numbers behind the scenes, and Susan Russell spoke about treatment and management.
Making informed family planning decisions
Chair: Dr Susan Russell
Prenatal/PGD testing – Peter Field
A journey through genetic counselling and prenatal diagnosis – Pauline McGrath
Role of Haemophilia Centres in genetic counselling – Robyn Shoemark
The Saturday morning plenary was all about making informed family planning decisions.
This session covered prenatal/pre-implantation genetic diagnosis (PGD) testing and Peter Field gave a great overview about the methods and costs of a PGD cycle. Pauline McGrath followed with a journey through genetic counselling and prenatal diagnosis. As a counsellor she talked about how everyone has a different path to take and informed us of the options available for family planning.
I then presented from a nurse’s perspective. As the first point of call for most patients and their families, we are often asked what is available, who should we talk to, what are our options, when should we test our girls? Nurses are usually the ones taking the bloods for genetics so this is when we need to think about what our answers will be when we are asked the many questions that patients and families have. We need to be informed so that we can pass on that information correctly. There are many things that need to be considered such as consent, when we test, how we inform results, how we coordinate testing of sisters and other extended family members. Girls, whether they are known or suspected carriers, should all have their factor levels checked and then have further testing when they reach the age of consent to determine carrier status. It is always better to know if you are a carrier before starting a family or falling pregnant. Ultimately, everyone needs to be informed and education should be an ongoing process where the individual/family is involved at every step.
All in all it was a great conference and for many has changed our ideas of what is in the future for both people with haemophilia and health care workers. Many thanks go to the organisers, the presenters, and everyone who attended and made the meeting what it was.
See you in 2017 for the next conference.
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