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Just from reading a little about neurofibromatosis, it sounds like a very dangerous condition. Is it true that any of the tumors that are produced by neurofibromatosis are potentially fatal? How effective are treatments for neurofibromatosis? What can you tell me about this? What is the life expectancy for people who have neurofibromatosis?

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Honestly, it depends on the serverness of the condition. I'm 20 years old and was diagnosis with it when I was about 13 cause I did not have any of the usual symptoms ect. Larger head than normal when I was a baby. And TYPICALLY the tumors are not deadly... it just depends where they are at. But, the doctors haven't given me a "you have this long to live" So, there is not "life expantcy" most people will live normal lives til they are old with age.
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I am Hassen  last year medical student in addis ababa, Ethiopia. my younger sister has NF1 with plexiform neurofibroma on right sciatic nerv. It is 25 cm long is very painfu which can not be controlled by any analgesic. I am tiered & confused how to help my younger siste!

 

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I have a large head and trouble learning too and a deformed ankle from my neurofibromatosis type 1. But doctors cant do anything for me I guess
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There is nothing to really worry about. My father has NF and he is 71, I have NF and my son has NF there is really o life expectancy with NF.

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Hi. I have NF as well my tumor is a little more rare in the nerves in my left hand. I've been having surgery on it since I was 2 years old. Find a new doctor. There is help. I am currently tumor free and its been 4 years. It will be back but it will take longer to grow. My doctor has surrounded the root of my tumor with scar tissue over the years and it helps a lot. It slows and restricts the growth. A lot of doctors I've met don't even know what NF is. Try Cincinnati Childrens hospital in Ohio. I'm a patient there and they accept adults with special circumstances
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Thanks for clearing this up, I have it too & now new lumps are appearing out of nowhere. I'm hoping they find a cure for this. I just gotta find the right doctors.
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