NEWSLETTER

In October, Canberra hosted the 14th Australian and New Zealand Haemophilia Conference, the first such conference to be held here. The conference was organised by the HFA but also relied on support of volunteers from HFACT. Thank you to everybody who volunteered. Your contributions helped to make the conference the great success that it was.

International guest speaker, Dr Katherlijn Fischer from the Department of Haematology, University Medical Centre, Utrecht in the Netherlands

Many HFACT members attended the conference and the following articles are a selection of their impressions and thoughts about the conference.

Abstracts and summaries of the conference proceedings can be found online in the conferences section of the HFA web site at www.haemophilia.org.au .

The committee of HFACT wishes all our readers a Merry Christmas and a Happy New Year. We look forward to seeing you at our functions in 2008.

Conference Reports

My First Conference

Here are some reflections on the HFA Conference from one delegate who had never been to one before:

 If there is one thing I learned from this conference it was that I should have attended many other conferences in the past. I had always been a sceptic of such conferences: "they're probably more intended for the professionals: the doctors, nurses, physios etc. There is probably little of value for me or for me to share with others." I was wrong. I found that of the sessions I went to all, with one exception, had a great deal to offer. The information that was disseminated and the manner in which it was delivered was most impressive. Not wrapped or hidden in “medicalese” but to the point. I especially found the session given by Professor Farrell enlightening.

For a wonderful contrast, I found the hour and half given by Shayne Yates and his wife hilarious and enjoy his weekly laughs by email.

It can be a problem sometimes that one has to choose between options and perhaps a way round this is to either cut the optional sessions or extend the conference by a half day.

The committee at both the HFA and HFACT level deserves praise for the way the show was put on.

I look forward to finding an excuse to make it to the Brisbane conference in two years.

Len Minty

The Donaldson family, also first timers, were welcomed into the Haemophilia community.

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Nursing Perspective

A snapshot of thoughts gleaned from the14th Australian and New Zealand Haemophilia Conference.

Associate Professor Ian Kerridge from the University of Sydney opened with a thought-provoking discussion about ‘Ethnomics’.  He described how improvements in care, life expectancy and quality of life have created new possibilities for people with haemophilia, however they have also created new and complex questions regarding the appropriate goals, limits and organisation of haemophilia services.  He believes that the rapid rise in the cost of factor replacement and the chronic needs of people with haemophilia demand that these questions be confronted sooner rather than later.

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.

I think all delegates would agree with me that the most enjoyable session was ‘You won’t die from laughing’.  Patricia Cameron-Hill and Dr Shayne Yates are world experts on stress and humour, and they showed how laughter and humour can be used to diffuse stressful situations, restore perspective, boost energy, improve relationships and simply make you feel good!

Liz Jarvis

Youth delegates renew friendships and make new ones at the HFA Conference

Exercise in Haemophilia

The Haemophilia Foundation Australia Conferences are terrific! I must start by thanking the Haemophilia Foundation for all the support that they give the physiotherapists to get together on a regular basis.  We had our meeting the day prior to the Conference.  It gives us an opportunity to catch up on what is happening in various centres all over Australia and New Zealand, as well as renew friendships and to make new ones. Most of the physiotherapists give a presentation on a therapy/haemophilia related topic, which this year included splinting, joint replacements, pain management, and aquatic physiotherapy.  As always, there is much discussion and exchange of information.  Sharon, Natashia and Suzanne O’Callaghan from the HFA office in Melbourne also gave us presentations to keep us up to date with what is happening in the HFA.

On the first day of the conference, I was fortunate to be the Chair of the session titled “Fitness in Children”, a subject dear to most physiotherapists’ hearts…..especially the “fitness” bit!  Through contacts at the AIS (Australian Institute of Sport) I made contact with Carolyn Broderick, a doctor at the Children’s Hospital Institute of Sports Medicine (CHISM).  Did you know it existed?  Well, neither did I!  She presented her research into Fitness and Physical Activity in Children with Haemophilia, where she is determining the effect of exercise on quality of life, aerobic fitness and strength.  The results so far are promising with evidence that regular exercise may be especially beneficial in children with Haemophilia.  As well as the advantages that we all know about, it may result in increased bone density and reduced number of bleeds.

The next talk was on strategies to promote healthy participation in exercise by Wendy Poulsen and Salena Griffiths from Brisbane.  Oh yes, we have heard all the excuses of why “we” can’t exercise…we have probably made some up ourselves!  This talk gave us ideas on how to encourage regular exercise, e.g. looking at specific sports, liaising with teachers and coaches to enable full participation, advice on warm up/cool down and providing a plan if injury occurs.

The session concluded with Jack Finn, an adventurer and motivational speaker from New Zealand (he also has haemophilia).  He entertained us with his story of solo kayaking around the sub-Antarctic Auckland Islands.  This also included a video which combined pictures of spectacular landscapes as well documenting times when the “going” got really tough.  It was a truly inspirational presentation.

Now we can look forward to the next conference...!

Gwen Sampson

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A Personal View

I was really pleased to have attended this years Conference and enjoyed meeting delegates for the first time, in particular the young people from NZ and some young mums of recently diagnosed babies with Haemophilia. It was interesting for me to see how far treatment has advanced since my children were that age(!) and very pleasing to know how well these young children are tracking and how well the mums were coping.

A highlight for us was having our son Damian attend the conference. After his recent illness and chemotherapy treatment, it was a tremendous joy for us. He was one of the musicians in the band for the Gala Dinner and they were just great. A fun time was had by all. The venue of the Hyatt was fantastic, as was the food.

Damian Wensing entertains diners at the Gala Dinner

The sessions that I attended were very good, in particular I found the sessions on Hepatitis C very informative, and the personal testimony of Neil Boal was very moving and really spoke to me. I believe future conferences should include more personal testimonies. It not only connects people with common experiences and puts more of a human face to all the issues that the Haemophilia community has to deal with, but it's also a great way of learning. One can pick up so much from other people's shared experiences, in the way they cope and deal with their problems and some of the things they have discovered that have helped them.

On a very light note, my dear mother who attended the Gala Dinner, was wandering around viewing the stalls just prior to dinner. She was very alarmed to see that people were just 'taking' things like bags, drink bottles, books etc (seemingly without paying for them)! She couldn't get over the 'brazenness' of people walking off with these things and when she asked a person what he was doing (wanting to do the right thing of course) the person, remarked in a quite relaxed manner that he was just taking it! I was able to put her at ease once I explained that the items were all free and for the taking.

Maria Wensing

Three Generations

I have been to many HFA conferences over the past thirty odd years. However for me this conference was different in two respects.
Having the conference in my home town brought a different dimension to the event. Instead of travelling to somewhere new and being shown around, I found myself showing other people aspects of the host city.

More importantly, precisely because it was held locally, I was able to offer accommodation to members of my extended family and thereby persuade them visit Canberra and come to a conference for the very first time. So three generations of my family attended. What an eye opener it was for them. Like Len Minty, they had thought that the conferences would be too medical. Now they wish that they had come before.

Each generation, young and old, found aspects of the conference that were relevant, made friends, shared experiences, obtained insights and information. They have a better knowledge of haemophilia and bleeding disorders, a better idea of the resources available to them and are able to share my life more fully. This last aspect was very important for me. Having tried rather unsuccessfully to involve my family for so many years, attending a conference together finally made the difference.

I think that the experience of my family embodies what these conferences are all about: sharing life’s journey, friendship, knowledge, supporting each other and working toward the future.

Ron Lees

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Annual General Meeting

On the 29th October, HFACT held its 2007 Annual General Meeting in the usual and traditional manner - namely, a night out at a local restaurant where the formal business of the evening was allayed by pleasant surroundings, good food and, of course, friendly company.

We met at the Ginseng Restaurant in Manuka, although initially confusion reigned as they had no record of our booking. Nevertheless, we were promptly accommodated by squeezing us all in to the only available space. After numerous courses had been shared around the table it was even more of a squeeze!

During the meal we attended to the business of the AGM. In particular the annual and financial reports for the past year were distributed and tabled. The highlight of the year was the HFA conference reported on in this newsletter. The reports will be available on our web site shortly if you wish to read them.

Elections for office bearers were held, and for 2007-2008 they are:
  President: Fred Wensing
  Vice President: Simon McMenamin
  Treasurer: Steve Wells
  Secretary: Joe Guarnieri
  Office bearers: Lorraine Saunders & Len Minty
  Newsletter & IT Support: Ron Lees

After the main meal we continued on to one of the many coffee shops in Manuka and, for those who still had room, we indulged in sweet cakes, desserts and coffee while chatting and enjoying the company of other HFACT members until late in the night.

Acknowledgement

The Haemophilia Foundation ACT would like to acknowledge that our newsletter has been partly funded through funds provided by ACT Health.