Neurofibromatosis
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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
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
- 144 say neurofibromatosis is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 5 | |
| 30s | 14 | |
| 40s | 17 | |
| 50s | 8 | |
| 60s | 15 | |
| 70+ | 45 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 13 | |
| 20-29 years | 4 | |
| 30-39 years | 4 | |
| 40-49 years | 5 | |
| 50-59 years | 1 | |
| 60-69 years | 1 | |
| 70+ years | 1 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 57 | |
| Female | 127 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 80 | |
| Not Diagnosed | 6 |