Retroperitoneal fibrosis
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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 retroperitoneal fibrosis?
Retroperitoneal fibrosis is a condition characterized by fibrous masses forming in the area behind the stomach and intestines. This excess tissue can block the tubes that carry urine from the kidney to the bladder. Symptoms can include pain, discoloration of the lower limbs and urine changes.
Common symptoms reported by people with retroperitoneal fibrosis
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 retroperitoneal fibrosis
Treatment name(s)
Type
How many have tried
Tried for
Data from patients with retroperitoneal fibrosis, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with retroperitoneal fibrosis
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
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
retroperitoneal fibrosis
(1)
Perceived effectiveness
for retroperitoneal fibrosis (1 evaluation)
Side effects
mood swings
Total evaluations
1
Tried for
retroperitoneal fibrosis
(1)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with retroperitoneal fibrosis, who reported starting treatments within the last 5 years.
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Who has retroperitoneal fibrosis on PatientsLikeMe?
- 31 patients have this condition
- 1 new patients joined this month
- 25 say retroperitoneal fibrosis is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 2 | |
| 30s | 3 | |
| 40s | 1 | |
| 50s | 7 | |
| 60s | 10 | |
| 70+ | 6 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 0 | |
| 20-29 years | 1 | |
| 30-39 years | 1 | |
| 40-49 years | 1 | |
| 50-59 years | 5 | |
| 60-69 years | 2 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 10 | |
| Female | 21 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 15 | |
| Not Diagnosed | 1 |
These charts show data from retroperitoneal fibrosis patients who have completed their condition history
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