Wilson disease
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- 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 Wilson disease?
Wilson's disease is an autosomal recessive genetic disorder characterized by copper accumulation leading to neurological or psychiatric symptoms and liver disease.
Common symptoms reported by people with Wilson disease
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 Wilson disease
Treatment name(s)
Type
How many have tried
Tried for
Data from patients with Wilson disease, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with Wilson disease
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
depressed mood
(1)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
drowsiness
Total evaluations
1
Tried for
anxious mood
(1)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
drowsiness
grogginess
Total evaluations
1
Tried for
anxious mood
(1)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
dizziness
Total evaluations
1
Tried for
anxious mood
(1)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with Wilson disease, who reported starting treatments within the last 5 years.
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Who has Wilson disease on PatientsLikeMe?
- 42 patients have this condition
- 0 new patients joined this month
- 26 say Wilson disease is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 1 | |
| 20s | 11 | |
| 30s | 10 | |
| 40s | 5 | |
| 50s | 9 | |
| 60s | 1 | |
| 70+ | 0 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 2 | |
| 20-29 years | 2 | |
| 30-39 years | 1 | |
| 40-49 years | 0 | |
| 50-59 years | 1 | |
| 60-69 years | 0 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 18 | |
| Female | 18 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 7 | |
| Not Diagnosed | 1 |
These charts show data from Wilson disease patients who have completed their condition history
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