What is neurofibromatosis?

Neurofibromatosis is a genetic disorder of the nervous system that causes tumors to grow along the path of nerves. Type 1 is most prevalent and causes neurologic, skin, and sometimes soft-tissue or bone deformities. Type 2 is primarily manifested as congenital bilateral acoustic neuromas.

How do members experience neurofibromatosis?

Top 5 symptoms reported by people with neurofibromatosis*

*Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.

Top treatments taken by people for neurofibromatosis*

Who has neurofibromatosis on PatientsLikeMe?

Age

Age Proportion # of patients
<20 9
20s 18
30s 40
40s 46
50s 40
60s 31
70+ 20

Distribution of sex

Sex

Sex Proportion # of patients
Male 66
Female 140

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is neurofibromatosis?

Neurofibromatosis is a genetic disorder of the nervous system that causes tumors to grow along the path of nerves. Type 1 is most prevalent and causes neurologic, skin, and sometimes soft-tissue or bone deformities. Type 2 is primarily manifested as congenital bilateral acoustic neuromas.



Common symptoms reported by people with neurofibromatosis

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Last updated:



Treatments taken by people for neurofibromatosis

Let’s build this page together! When you share what it’s like to have neurofibromatosis through your profile, those stories and data appear here too.

Got a question about living with neurofibromatosis? Members in the forum might have the answers.


Compare treatments taken by people with neurofibromatosis

Let’s build this page together! When you share what it’s like to have neurofibromatosis through your profile, those stories and data appear here too.

Got a question about living with neurofibromatosis? Members in the forum might have the answers.



Who has neurofibromatosis on PatientsLikeMe?

  • 0 new patients joined this month
  • 162 say neurofibromatosis is their primary condition

Age
Age Proportion # of patients
<20 9
20s 18
30s 40
40s 46
50s 40
60s 31
70+ 20
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 39
20-29 years 9
30-39 years 4
40-49 years 4
50-59 years 2
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 66
Female 140

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 81
Not Diagnosed 5

These charts show data from neurofibromatosis patients who have completed their condition history
Last updated: