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Wendy Varley's avatar

Terrifying, Jacqui. Thanks for the low-down. I only know one person personally who had it and fortunately it was caught in time, but as you say, it can so easily be missed.

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Jacqui Gatehouse's avatar

Thanks Wendy - if I can help just one person then I'm happy. There's been so much publicity about symptoms for things like meningitis, which are often so much more distinctive, but nothing about NF. And yet NF kills a much higher proportion of the people that get it. It's that unexplainable excruciating pain which is really the only common factor.

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