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WGSGA Annual General Meeting

 19/07/08 -  12:00PM Lunch 1:30PM Meeting 

Bells Hotel, South Melbourne. All Members and Families/Friends are encouraged to attend. 

RSVP to Cathy Tossel (03) 9874-7249 by 10/07/08

WE HOPE TO SEE YOU THERE!

2008 Committee Meetings

18/05/08 Melbourne

13/09/08 Melbourne

22/11/08 Melbourne

  4th  BIENNIAL NATIONAL CONFERENCE 2007  

Conference Conclusions

The 4^th biennial Wegener’s Support Group of Australia was again held at Rydges on 13october2007.Although not as well patronised as the last conference there were still some 42 attendees some of whom had traveled great distances to attend the conference.

The conference was again opened by the President of the Support Group, Wally Van Dort and after welcoming all those present gave those present some of the strategies he uses for coping with his WG.

Associate Professor Justin O’Day was the first speaker. Justin, who is a well known and respected ophthalmologist, gave an insight into how the eye works and how WG may affect it and its diagnosis if WG should become present in the eye. He also presented the various options for localised treatment and gave some recommendations of what products were best to use. His talked raised many questions and by the time these were answered the proposed schedule was already running late.

After a short break Zena Sharples from Carer's Victoria spoke on the importance of carers looking after themselves both physically and emotionally. She also spoke on how WG sufferers may be able to cope better emotionally and psychologically.

Dr Anne Holland then gave a talk on the importance and benefits of exercise for WG patients. Anne is a renowned research physiotherapist who has done much work in the area of pulmonary rehabilitation and respiratory physiology and was therefore well qualified to speak on how WG patients may initiate some sort of exercise program into their daily lives and thus use this as another means of managing WG.

After what appeared to be a shortened lunch the afternoon proceedings commenced with a talk from Dr Bernie Lyons who is the head of the Head and Neck Unit at St Vincent’s Hospital in Melbourne. He commented that it was just as well his talk was after lunch as some of his slides may have spoilt some people’s lunches. Although much of what he spoke about had been covered in previous conferences, his excellent presentation and some new facts made for an interesting talk.

Mr David Clarke, a well respected, urologist, then spoke intricately on that mainstay of initial treatment for WG, the immuno suppressant, Cyclophosphamide. He led us through the history of the drug, its various components, how they work and also that component which can cause all those problems some of us have experienced with this drug. He also suggested that those of us that had been on it for a long time should get our bladders checked regularly for any signs of early problems which can still arise 21 years after completion of treatment.

Professor Judy Savige, who is the head of medicine at Melbourne’s Northern Hospital,

then gave as a look into what ANCA actually is, its role in WG and how it is used by physicians in the diagnosis and ongoing treatment of WG. She also presented an update of where the latest treatments for WG were heading.

The last three speakers then formed a panel allowing conference participants to ask various questions to any of the speakers. Fortunately all questions were able to be answered and attendees appeared satisfied that they were able to not only have the time but also to be able to ask important questions from such a well respected group of doctors.

The closing speech was then presented by the president of the support group. He spoke of the importance of having control in our lives and the understanding of being here, of living in the present moment and not in the future.

As mentioned previously, even though the number of participant were down on the last conference, the 4^th Biennial WG Support Group conference was warmly accepted by all those who attended, and was commended by all the speakers who graciously gave of their valuable time to come and give their knowledge, so that we may gain a better insight into how to live and cope with WG. All in all a most successful conference, which hopefully, can be replicated in two years time.

Written by WGSGA President Wally Van Dort

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For any information please contact:

 mandy.c@wegenersaustralia.com