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My life with NF1
  1. C M Beadle
  1. Correspondence to:
    Dr H Marcovitch
    Syndication Editor, BMJ Publications;

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The index of the most recent edition of the standard UK paediatric textbook refers the reader to 10 pages featuring neurofibromatosis. Reading them one learns about the diagnostic criteria, neuroimaging features, genetics, and the special features of eye and skin involvement but not about on how patients might feel. Perhaps that is hardly the mission of a clinical and academic text. This month Miss Beadle fills the gap by reminding us what it is like for her.

My memory isn’t very good, but from what I can remember of my childhood, I was very quiet and withdrawn and although I read a lot, I didn’t retain much. My teachers all thought I was lazy and not willing to learn. Even I couldn’t understand why it took me so long to grasp simple things. Then I had my first epileptic fit when I was 6.

I remember feeling scared because of the way my body felt after I had a seizure, and confused because …

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