Variegate porphyria
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 variegate porphyria?
Porphyrias are defined by the specific enzyme deficiency. Variegate porphyria, also known as mixed porphyria, exhibits characteristics of the two main types of porphyria including neurovisceral abnormalities of the acute porphyrias and skin photosensitivity seen in the cutaneous porphyrias.
Common symptoms reported by people with variegate porphyria
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 variegate porphyria
Treatment name(s)
Type
How many have tried
Tried for
Data from patients with variegate porphyria, who reported starting treatments within the last 5 years.
Last updated:
Compare treatments taken by people with variegate porphyria
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
increased sleepiness
Total evaluations
1
Tried for
anxious mood
(1)
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
pain
(1)
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 variegate porphyria, who reported starting treatments within the last 5 years.
Last updated:
Who has variegate porphyria on PatientsLikeMe?
- 12 patients have this condition
- 0 new patients joined this month
- 9 say variegate porphyria is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 0 | |
| 30s | 1 | |
| 40s | 4 | |
| 50s | 4 | |
| 60s | 3 | |
| 70+ | 0 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 0 | |
| 20-29 years | 2 | |
| 30-39 years | 3 | |
| 40-49 years | 0 | |
| 50-59 years | 0 | |
| 60-69 years | 0 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 3 | |
| Female | 9 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 6 | |
| Not Diagnosed | 0 |
These charts show data from variegate porphyria patients who have completed their condition history
Last updated: