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Neurology (Expert Forum)
NF1 severity?
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NF1 severity?
by Kathryn__0__0, Nov 04, 1998 12:00AM
My daughter was diagnosed with NF1 at about 1 year old. She has axillary freckling and too many to count cafe au lait spots and she continues to get more all the time. She is now 8. In the past two years (after annual eye exams since 1) they have seen Lisch nodules in only one eye. Is it possible this is as far as the disease will progress? Is it possible she could just be a "spotted child" for the rest of her life with no other symptoms? I'm just wondering if the Lisch nodules is just the beginning or could this just be the extent of it. Thanks.
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There is no way to predict whether this will be the extent of the
manifestations of the NF, it is good that the manifestations have been
few and far between so far, but there is no evidence that this is
necessarily predictive of her course in the future.
It is of course possible that things may not progress any further.
Some people only have NF diagnosed because of skin lesions later in life,
in an individual case however there is no way to make specific predictions.
