Neurofibromatosis

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 with neurofibromatosis

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Celexa)
Type
Prescription Drug
How many have tried
2
Tried for
depressed mood (2)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
1
Tried for
depressed mood (1)
Treatment name(s)

(Lexapro)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(Ibuprofen Prescription)
Type
Over the Counter Drug
How many have tried
1
Tried for
depressed mood (1) pain (1)
Treatment name(s)

(Optalgin)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Zyprexa)
Type
Prescription Drug
How many have tried
1
Tried for
depressed mood (1)
Treatment name(s)

(Oxycodone IR)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Inderal)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)
Type
Surgery
How many have tried
1
Tried for
neurofibromatosis (1)

Data from patients with neurofibromatosis, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with neurofibromatosis

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Celexa)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (2)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
Total evaluations
4
Tried for
depressed mood (1)
Treatment name(s)

(Lexapro)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood (1)
Treatment name(s)

(Ibuprofen Prescription)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (1) pain (1)
Treatment name(s)

(Optalgin)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (1)
Treatment name(s)

(Zyprexa)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (1)
Treatment name(s)

(Oxycodone IR)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Lyrica)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Inderal)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
suicidal thoughts or urges
Total evaluations
1
Tried for
anxious mood (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
neurofibromatosis (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with neurofibromatosis, who reported starting treatments within the last 5 years.
Last updated:

Who has neurofibromatosis on PatientsLikeMe?

  • 1 new patients joined this month
  • 141 say neurofibromatosis is their primary condition

Age
Age Proportion # of patients
<20 16
20s 23
30s 39
40s 32
50s 41
60s 22
70+ 6
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 9
30-39 years 3
40-49 years 4
50-59 years 2
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 54
Female 129

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 80
Not Diagnosed 6

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