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Patients Neurofibromatosis

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Member Carenity • Community manager
Posted on

Hi everyone,

Neurofibromatosis is a condition that can cause tumors to form in the brain, spinal cord, and nerves, which can cause varying symptoms and complications.

What are the most troubling symptoms and complications? What do you wish you could get rid of and/or change?

Beginning of the discussion - 6/1/19

What are the most troubling symptoms and complications?
Member Carenity
Posted on

This is a great question. I have NF 1, what about others? Anyone else with NF 1?

My many issues were delayed learning when I was young, permanent scoliosis, and high blood pressure, and of course cafe-au-lait spots - most prominently around my lip :(