children with clusters

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Posted by annemarie ( on March 25, 2001 at 14:41:03:

Hello all,

We know now that children and young people can suffer CH. I have looked at the bio's and I have seen stories from people who have had it since age 9 and 13 and 17 and even somebody posting s/he has been a sufferer since age 3!

What to do for the young sufferers of today, we don't rightly know. Heck, we don't even know how to cure our own clusters!

But there's one thing we CAN do.

Most of us complain, rightly, about the lack of understanding from colleagues, family, friends... But we are grown-ups and some of us can fend for ourselves very nicely. Children are often much more vulnerable.
Teachers that don't understand, classmates calling names, docs that can't seem to believe that young people get clusters too.

I think a booklet relating the experiences of young cluster sufferers might be a great support for parents and a sort of relief for the children themselves.

I have tried to contact parents of young sufferers that have come to this and the ukch cluster site but the result has been disappointing. Probably both parents and children have too much on their plate to write life stories for me!

So I am asking you, all the grown ups who started clustering at an early age, to go back into time and contribute some of your experiences.
My aim is stories that young people can relate to. It won't be all too tearful, and any tips about coping would be worth their weight in, let's say imitrex?

I hope my post box will be overflowing. Annemarie

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