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One of the highlights of last year's
national haemophilia conference held in Canberra was the
emphasis on women's issues. HFACT received this excellent
report from Kate McKenzie giving her perspective of issues
relevant to women with a bleeding disorder or affected by a
bleeding disorder in their family.
I was delighted to hear that the haemophilia conference
was to be held in Canberra last year. It was 10 years since I
had attended a haemophilia conference in Melbourne, when I
was pregnant with my son Allan. At the time, it was an
interesting experience to learn about the treatments,
services, and meet some of the haemophilia community in
Australia.
A little background regarding my family history: I
immigrated in 1970 with my parents and sister. My mother (an
undiagnosed carrier at the time) has a brother with severe
haemophilia. I also have three cousins of varying ages with
haemophilia living in Finland. I have always been close to my
relatives in Finland, so I have always been aware of my
potential haemophilia carrier status. After I was married, we
decided that I should have my carrier status checked, before
we decided to have children. My carrier status was confirmed
in 1995. Allan was born in 1998 and he does not have
haemophilia. We have chosen not to have any further children,
even though we are aware of the huge changes in haemophilia
treatments regimes and services.
The main reason I attended the conference was to learn
more about new information regarding carrier's health and
well being. I was delighted to see the conference sessions
divided to provide information on various themes. I attended
the conference on the Saturday.
Dr. Angela Mackenzie, Royal
Children’s Hospital, VIC spoke about techniques she has
developed to help children overcome needle phobia,
anticipatory anxiety and increased sensitivity to pain while
undergoing medical treatments including administering factor
replacement and treatment for bleeds. Some of the techniques employed include music,
storytelling and distraction, as well as allowing parents to
hold their children in comforting positions.
The morning plenary session covered the "Individualisation
of prophylactic treatment of severe haemophilia: when to
start and when to stop" by Dr Katherljin Fischer,
who spoke about prophylactic treatment regimes in patients in
Denmark and the Netherlands. Then, Dr Penelope Foster from
the Melbourne IVF spoke about the "Pre-genetic
diagnosis/reproductive technologies" available in
Australia and provided an insightful overview of the options
of sex-selection or specific gene detection. Dr Foster also
mentioned some of the negative aspects (pitfalls) of the
procedures. At least now, there are other options for couples
to consider when choosing to have a family, who are living
with haemophilia.
The first concurrent session titled Women's Wisdom
covered:
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"Mothers, partners,
carers, people with bleeding disorders and carriers of the
haemophilia gene" by Belinda Burnett. She spoke
about her experiences with her daughter with haemophilia,
which raised many interesting questions about her
daughter, as she is now entering her teens.
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"Menorrhagia: best
care and practice" by Dr Julia Phillips. This
session highlighted that we as carriers (with lower than
normal clotting factor) may need to be aware of our
options if you are suffering with heavy menstrual
bleeding. It is a major health problem for women in
general, which may be unrecognised by patients or doctors.
The surgical approach of endometrial ablation and
hysterectomy should be used only as the last option.
Collaboration between family doctors, gynaecologists and
haematologists is important to ensure all options have
been assessed, depending on your own medical needs.
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"Management of
delivery in carriers and management of the newborn"
by Susan Russell. I found this talk interesting, because
the speaker spoke about the monitoring regimes of the
mother of known carrier status and of the (unborn) baby;
during the birth and post management of the newborn. I
noted that considerable changes have been made since I had
Allan.
The second concurrent session, titled "Planning
and Managing Best Practice Care and Treatment",
covered various topics which I was not familiar with and it
was nice to be enlightened in areas such as the Australian
Bleeding Disorder Registry, The National Blood Authority,
government priorities and the safety of haemophilia products.
It is very important to be familiar with the current issues
with haemophilia treatment, even as a carrier, because there
is always the potential of major surgery and possibly
requiring treatment with factor if our clotting factor is too
low, to avoid or reduce haemorrhage.
I attended the Women's breakfast on the Sunday morning, a
last minute decision. I found Mary Lou's story inspiring.
Len's haemophilia, raising children, working and travelling
the world, and finally, fund raising. Travelling to Africa
and teaching children, and continuing to support a teaching
program and an orphanage; such an inspiring story. I
thoroughly enjoyed speaking with other carriers, carers and
health professionals.
I would like to thank the conference organisers,
volunteers and all those involved for a fabulous,
informative, well organised conference - Well Done!
Inspired by the Women's breakfast, Clare Reeves and I have
decided to organise a Women's Wisdom afternoon tea for carers
and carriers to have an opportunity to chat about any issues
or inspiring highlights, we may wish to discuss with each
other.
Kate McKenzie
An invitation to high tea at the Hyatt on Saturday 29th
March is enclosed with this newsletter.
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