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How does your doctor know you have NF-1?1

Some signs of your NF-1 will have been on your body since you were a tiny baby. Some others might only just be appearing now. You will be able to see some of the signs on your body and you might even be able to feel some of them.

Some signs of NF-1 can’t be seen. Doctors and nurses have ways of looking at all of the signs of NF-1 that you and your family can’t see for yourselves.

Here are some of the things
that will help your doctor know if you have NF-11:

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Light brown patches1

Many people with NF-1 have light brown patches all over their body.

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Freckles1

Some people with NF-1 have lots of freckles all around their armpits, at the very bottom of their tummy, and at the very tops of your legs.They might also have freckles on their eyelids, chest, and neck!

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Eyes1

The doctor might want to look at your eyes for signs of NF-1 using a bright light.

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Skin1

Lots of people with NF-1 have lumps on or under their skin.

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Bones1

NF-1 can cause your bones to grow a little differently. Your doctor may check how tall you are or how straight your legs are.

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Genes1

A doctor called a geneticist will look for DNA instructions that are only found in people with NF-1.

References:

  1. Tamura R. Current Understanding of Neurofibromatosis Type 1, 2, and Schwannomatosis. Int J Mol Sci. 2021;22(11)5850.