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GUILLAIN BARRE SYNDROME SUPPORT GROUP
SOUTH EAST QUEENSLAND - JULY 2003
Kevin Shorrock and myself have been in contact on a regular basis, but have not felt it necessary to have a formal meeting in the last six months.
At the moment we are visiting one patient in hospital. He has been hospitalised for 10 months and after a series of set backs is now well on the road to recovery. He is in rehab and doing very well.
Medicare promotion in Brisbane was also a disaster, as with NSW we also found the GBS/CIDP awarness week to be non productive. Many people wanted to send Kevin their refund cheques, asked if he knew who the doctor was on the cheque, or even what the cheque was for. If anything the exercise has shown that Medicare needs to explain the refund cheque more clearly. Kevin fielded about 40 calls and only 2 inquired about GBS.
Generally things are reasonably quiet here in the Sunshine State, and Kevin will be away from next week until mid October, on a touring holiday.
We have finally initiated our Web Site and encourage everyone to have a look and give us some feed back. It is only a basic information site, but contains links around Australia and overseas. It is http://www.xmedia.ne.jp/gbs_qld Please inform us if you see any changes necessary.
This week we spoke to Janet Wong of the Blood Bank in Brisbane who informed us that Intragam levels in Brisbane at present are adequate. We also suggested that we include web site addresses as a link on our web site. This would hopefully make donating and information more accessible.
We had a lovely response from a previous patient, Barbara, who has taken the last year to recover from a very severe case of GBS. It was lovely to hear that we had made a difference to her recovery due to our visits. She is now well enough, she recently travelled overseas!
We were wondering if it may be a good idea to look into having a live
chat room or discussion forum instead of confralink, where we would be
typing instead of talking. We're looking into details, but it's just
a suggestion. Thought it may help to keep costs to a minimum.
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