Retinitis pigmentosa
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- help each other live better and uncover the best ways to manage your health today
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How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.
What is retinitis pigmentosa?
Retinitis pigmentosa refers to a group of inherited diseases causing retinal degeneration and eventually blindness. There are multiple genes that, when mutated, can cause the Retinitis pigmentosa.
Common symptoms reported by people with retinitis pigmentosa
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 retinitis pigmentosa
Treatment name(s)
Type
How many have tried
Tried for
Data from patients with retinitis pigmentosa, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with retinitis pigmentosa
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain
(2)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain
(1)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
retinitis pigmentosa
(1)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood
(1)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain
(1)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with retinitis pigmentosa, who reported starting treatments within the last 5 years.
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Who has retinitis pigmentosa on PatientsLikeMe?
- 74 patients have this condition
- 0 new patients joined this month
- 56 say retinitis pigmentosa is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 3 | |
| 20s | 11 | |
| 30s | 13 | |
| 40s | 13 | |
| 50s | 16 | |
| 60s | 7 | |
| 70+ | 3 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 7 | |
| 20-29 years | 5 | |
| 30-39 years | 6 | |
| 40-49 years | 1 | |
| 50-59 years | 2 | |
| 60-69 years | 0 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 35 | |
| Female | 33 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 28 | |
| Not Diagnosed | 0 |
These charts show data from retinitis pigmentosa patients who have completed their condition history
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