Retinitis pigmentosa

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 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.
Last updated:

Treatments taken by people with retinitis pigmentosa

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

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

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

(CVS Fish Oil)
Type
Supplement
How many have tried
1
Tried for
retinitis pigmentosa (1)
Treatment name(s)

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

(Home Physical Therapy)
Type
Physical Therapy
How many have tried
1
Tried for
pain (1)

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

Compare treatments taken by people with retinitis pigmentosa

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

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

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

(CVS Fish Oil)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
retinitis pigmentosa (1)
Treatment name(s)

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

(Home Physical Therapy)
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.
Last updated:

Who has retinitis pigmentosa on PatientsLikeMe?


Age
Age Proportion # of patients
<20 3
20s 11
30s 13
40s 13
50s 16
60s 7
70+ 3
Age at first symptom
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
Sex Proportion # of patients
Male 35
Female 33

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 28
Not Diagnosed 0

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