Brown-Vialetto-Van Laere syndrome
We’re all in this for good.
- 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 Brown-Vialetto-Van Laere syndrome?
Brown Vialetto Van Laere syndrome is characterized as nerve problems/damage in the region of the brainstem (pontobulbar region). Some of the nerve problems include hearing loss, breathing problems, and slurred speech.
Common symptoms reported by people with Brown-Vialetto-Van Laere syndrome
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 Brown-Vialetto-Van Laere syndrome
Treatment name(s)
Type
How many have tried
Tried for
Data from patients with Brown-Vialetto-Van Laere syndrome, who reported starting treatments within the last 5 years.
Last updated:
Compare treatments taken by people with Brown-Vialetto-Van Laere syndrome
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood
(1)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with Brown-Vialetto-Van Laere syndrome, who reported starting treatments within the last 5 years.
Last updated:
Who has Brown-Vialetto-Van Laere syndrome on PatientsLikeMe?
- 5 patients have this condition
- 0 new patients joined this month
- 4 say BVVL is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 2 | |
| 20s | 0 | |
| 30s | 2 | |
| 40s | 0 | |
| 50s | 1 | |
| 60s | 0 | |
| 70+ | 0 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 3 | |
| 20-29 years | 0 | |
| 30-39 years | 0 | |
| 40-49 years | 0 | |
| 50-59 years | 0 | |
| 60-69 years | 0 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 2 | |
| Female | 3 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 2 | |
| Not Diagnosed | 2 |
These charts show data from BVVL patients who have completed their condition history
Last updated:
Let’s build this page together! When you share what it’s like to have Brown-Vialetto-Van Laere syndrome through your profile, those stories and data appear here too.
Got a question about living with Brown-Vialetto-Van Laere syndrome? Members in the forum might have the answers.