Scleroderma
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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 scleroderma?
Scleroderma is a rare chronic autoimmune disease characterized by hardening (fibrosis) and vascular abnormalities. It is a multisystem condition that can involve the skin, joints, and internal organs, including the upper and lower digestive tract, lung, heart, and kidneys.
Common symptoms reported by people with scleroderma
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 scleroderma
Treatment name(s)
Type
How many have tried
Tried for
Data from patients with scleroderma, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with scleroderma
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
for scleroderma (9 evaluations)
Total evaluations
16
Tried for
scleroderma
(14)
Perceived effectiveness
for scleroderma (2 evaluations)
Total evaluations
2
Tried for
scleroderma
(4)
Perceived effectiveness
for pain (2 evaluations)
Side effects
fatigue
pain
Total evaluations
2
Tried for
pain
(3)
Perceived effectiveness
for scleroderma (1 evaluation)
Side effects
Total evaluations
1
Tried for
scleroderma
(3)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
depressed mood
(2)
Perceived effectiveness
for scleroderma (1 evaluation)
Side effects
Total evaluations
1
Tried for
scleroderma
(2)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
depressed mood
(2)
Perceived effectiveness
for pain (2 evaluations)
Side effects
liver damage
Total evaluations
2
Tried for
pain
(2)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with scleroderma, who reported starting treatments within the last 5 years.
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Who has scleroderma on PatientsLikeMe?
- 930 patients have this condition
- 2 new patients joined this month
- 654 say scleroderma is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 3 | |
| 20s | 26 | |
| 30s | 76 | |
| 40s | 186 | |
| 50s | 253 | |
| 60s | 230 | |
| 70+ | 72 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 35 | |
| 20-29 years | 39 | |
| 30-39 years | 73 | |
| 40-49 years | 93 | |
| 50-59 years | 46 | |
| 60-69 years | 14 | |
| 70+ years | 2 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 77 | |
| Female | 784 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 404 | |
| Not Diagnosed | 19 |
These charts show data from scleroderma patients who have completed their condition history
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