Saturday, June 19, 2010

Our Narcolepsy Support Group Meet-up

Summer is almost over …… hard to believe that it’s August already!
Wimbledon is over for another year, the World Cup is over for another four years, and the Tour de France until next year - with all three trophys finding new homes in Spain !!

We had a very enjoyable afternoon in
Dandelion in St. Stephen's Green for our open meeting on June 12th. While the group was a little smaller than hoped, those who did attend found it very worthwhile. Around fourteen people attended - some travelling from as far away as Galway, Mayo and Cork.

The atmosphere was very casual and informal with people arriving all through the afternoon. We discussed everything from the very serious to the absolutely hilarious. One or two issues were raised that I feel merit a mention here.

One was an idea that we as a committee had discussed and wanted a consensus from those present. We had the idea of issuing 'identity cards' to all members. These would be very useful in many situations, e.g. for students sitting exams, etc. However, they could also be a hindrance in other situations - for example, if you were involved in a traffic accident blame could be apportioned just because of your condition. Weighing up the pros and cons, those present agreed that the pros outweighed the cons. We'll be looking into this in the near future.

The other issue was more serious. Discussing our medications and the cost of them, it became clear that many people had serious problems financing these. Despite the limit of €120 per month, people were still struggling. Some people admitted to only taking the medication Monday to Friday and another person admitted to not taking any medication at all as they were between jobs.

I find this totally unacceptable. We need our medication to function at a basic level every day. Diabetics are entitled to all their requirements free of charge - why not Narcoleptics ? Asthmatics have been lobbying for this for many years. The way I see it, there are too many asthmatics and it would cost the state a lot of money. However, we are a relatively small group, so we may stamd a better chance !!

We are going to tackle this problem. As a general election looks likely soon, I urge all of you to lobby you local TDs. They really need your votes - so badger them for what I see as your entitlement in return.


Education of the public was also discussed. More importantly, in my opinion, the education of the ‘educators’ in our schools. We decided to concentrate on this when the schools resume in September. We hope to get appointments with the Ministers for Education, Health and Children. We will present a paper to be circulated to all schools, aimed at teachers, explaining the signs of Narcolepsy and the concessions that are required for sufferers. This paper will also be sent to the Teachers’ Unions and, if necessary, supported by presentations.

If any members have other suggestions or requests - please let us know. You can contact us on our Forum pages or by email to info@sleepy-heads.org. We are always happy to receive feed-back from members.

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