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7 Sep 16

18th International meeting of the World Federation of Neurology Research Group on Huntington’s Disease

(28 to 31 August 1999)
and

13th International Meeting of the International Huntington Association

(28 August to 2 September 1999)
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Conferance report by Shirley Elliott-Galloway of the Christchurch HD Assocation


The first part of this conference was held at the Kurhaus Hotel in The Hague Scheveningen, Holland, a beautiful old seaside resort area. After the welcome and official opening joint session the two groups separated and the IHA delegates introduced themselves. There were eighty five delegates and observers present from twenty five countries. This was followed by a presentation by Dr Karen Sirmon (USA) about using IVF for people who had a positive test result to ensure their children would not carry the HD gene before implanting ‘clear’ embryo’s. Morning tea was followed by Dr Seymour Kessler (USA) who talked about ‘Caring for Carers’ such as training and support groups for caregivers, then a panel session ‘Coping with Caring’, Dr Kessler, Jim Pollard and Dr Ken Barrett. Providing help where needed for caregivers other than professionals is a real problem in many countries as the average number of affected people is only four to seven per 100,000 of population. Suggested strategies were ‘time out’ by using whatever help can be begged, borrowed or stolen from other family members, friends or professionals and by using whatever short term residential care is available.

 

Following lunch we had a predictive testing update from Professors Aad Tibbenaud Gerry Kieboms of Holland. It is now ten years since testing became available and only about 20% of eligible ‘at risk’ people are taking the test, for many reasons. They have found people have as many reasons for not taking the test as those who do take it. Dr David Crauford (UK) then told us something about medical treatments such as anti-depressants, SSRI’s, Tricyclics, MAOI’s, Prozac, Sodium Valproate, and other low dose Neuroleptics, all of which seem to have varying side effects and are no longer being used as widely as previously although all can be useful in some cases. Some make people drowsy and some seem to cause insomnia, although this can be helped by way of a special duvet. He told us it has holes in it but didn’t have a sample to show. That was the end of what was for me a very long day, but some people went to a concert that night. My suitcase, along with many others, had been left at Heathrow in London so several of us only had the clothes we travelled in to wear for three days, but at last they did turn up again.


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Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
on this site, and to Graham Taylor for maintaining the original site for so long.

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