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Feeling Isolated with a Rare Disorder

Tuesdayk9

547d

having such a rare disorder in Nerofribrometosis(NF2) sometimes makes me feel so isolated. it's something I wish more people knew about so I had someone to relate and talk to... I grow non cancerous tumors along my nerves.... Elephant man had a serve form among his aliments.

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Migraine

Neurofibromatosis (NF)

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    • SmileySnail

      544d

      @Tuesdayk9 oh, migraines are terrible, I'm sorry they're coming from your NF. I imagine there's a lot that can happen with nerve tumors. You can always talk to me about whatever you want. I don't have NF but I'll always listen!

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    • Fldreamer

      545d

      🤗😥💕

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    • SmileySnail

      547d

      I have heard of it, and have read a little bit, although I don't have the condition myself. What symptoms do you suffer from due to it?

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      Reply
      • Tuesdayk9

        544d

        @SmileySnail well I get tumors throughout my body, they look like purple moles and usually aren't bad. But I do have what they call a mask in my optic kasim(behind my eyes) which causes me to have my sevre migraines

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        Reply
        • SmileySnail

          544d

          @Tuesdayk9 oh, migraines are terrible, I'm sorry they're coming from your NF. I imagine there's a lot that can happen with nerve tumors. You can always talk to me about whatever you want. I don't have NF but I'll always listen!

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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