Neurofibromatosis

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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.
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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)

(Lexapro)
Type
Prescription Drug
How many have tried
2
Tried for
anxious mood (1) depressed mood (1)
Treatment name(s)

(Oxycodone IR)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

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

(Marijuana)
Type
Other
How many have tried
1
Tried for
pain (1)
Treatment name(s)

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

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

(Tylenol with Codeine #3)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(CT Scan Head)
Type
Procedures
How many have tried
1
Tried for
neurofibromatosis (1)

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

(Lexapro)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
2
Tried for
anxious mood (1) depressed mood (1)
Treatment name(s)

(Oxycodone IR)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (2)
Treatment name(s)

(Abilify)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
depressed mood (1)
Treatment name(s)
Perceived effectiveness
for neurofibromatosis (1 evaluation)
Side effects
change in hair color diarrhea 6 more
Total evaluations
1
Tried for
neurofibromatosis (1)
Treatment name(s)

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

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

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

(Tylenol with Codeine #3)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (1)
Treatment name(s)

(CT Scan Head)
Perceived effectiveness
for neurofibromatosis (1 evaluation)
Side effects
Total evaluations
1
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?


Age
Age Proportion # of patients
<20 14
20s 22
30s 35
40s 30
50s 32
60s 16
70+ 4
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 40
20-29 years 7
30-39 years 3
40-49 years 4
50-59 years 2
60-69 years 0
70+ years 0

Sex

Distribution of sex

69% Female
31% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 77
Not Diagnosed 5

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