Well, our Forum has finally taken off ! It is buzzing with posts from old and new members. It's great to see so many people making use of the facility. The Forum is intended for use by our members - it is your forum, your space to communicate with other Narcoleptics.
This is the purpose of our Support Group - it is a tool for exchange of information and advice. Because Narcolepsy is an uncommon illness, it is very possible for sufferers never to meet another with the condition. I was diagnosed over ten years ago and until we started this initiative, I didn't know any others Narcoleptics. Because of lack of public awareness, mythology surrounding it and the nature of the condition, it can be very isolating. Depending on the severity of their symptoms, many narcoleptics are unable to function in the workplace or behind the wheel of a car, which only increases their sense of worthlessness and dependency. It's rather difficulty to be taken seriously when you frequently fall asleep in your dinner !!
What I find upsetting about our Forum is the number of Mothers whose children have been diagnosed or are waiting to be diagnosed with Narcolepsy. Some of these children are as young as 9. It's so encouraging to see these Mothers exchange experiences and advice. They are even organising to meet up, with the children, during the Halloween break. How good it will be for these children to meet others with the same problems as themselves.
It must be really difficult for any mother to watch her child suffer like this. Unless you have experienced cataplexy or hypnagogic hallucinations, it is very difficult to understand them. Suffice to say that I am frequently terrified by my hallucinations - and I am not a child. This emphasises, yet again, the need to educate the general public and, more importantly, our educators who are charged with the care of our children on a daily basis. The risk of these children being labelled as 'lazy' or 'unco-operative' is ever present until teachers understand that this behaviour is beyond the control of the child. By making small allowances, life can be made so much easier for the narcoleptic child. With a general election looking increasingly likely, we must put pressure on - and keep it on - our representatives to recognise the problems associated with narcolepsy. These include the cost of medications, as this is proving prohibitive for a number of our members. I am in the process of contacting all the Teachers' Unions with a view to educating their members, as well as the Ministers for Health, Education and Children.
I shall keep you udated on any developments !
Mims.
P.S. Next year, 2011, we celebrate 'World Narcolepsy Day'. This is a significant day in all our lives. I feel that we should do something significant to 'mark' the day. Anybody who has suggestions, please contact us. We would be most grateful for any or all of the suggestions we receive.
No comments:
Post a Comment