Cystic fibrosis
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 cystic fibrosis?
Cystic fibrosis is a rare genetic condition in which certain glands produce abnormally thick mucus. This mucus can cause problems in digestion, breathing, and body cooling. There are over 1900 known mutations that can cause CF. Treatments may include specific drugs and lifestyle changes.
Common symptoms reported by people with cystic fibrosis
Common symptoms
How bad it is
What people are taking for it
Common symptom
Exercise intolerance
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Fat in stool (steatorrhea)
How bad it is
What people are taking for it
Nothing reported yet
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 cystic fibrosis
Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)
Lumacaftor-ivacaftor
Type
Prescription Drug
How many have tried
2
Tried for
cystic fibrosis
(2)
Data from patients with cystic fibrosis, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with cystic fibrosis
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
No evaluations
Side effects
jittery feeling
Total evaluations
1
Tried for
cystic fibrosis
(6)
Perceived effectiveness
for cystic fibrosis (4 evaluations)
Total evaluations
4
Tried for
cystic fibrosis
(4)
coughing up phlegm
(1)
Perceived effectiveness
for cystic fibrosis (1 evaluation)
Side effects
hoarseness
Total evaluations
1
Tried for
cystic fibrosis
(4)
Perceived effectiveness
for cystic fibrosis (1 evaluation)
Side effects
Total evaluations
1
Tried for
cystic fibrosis
(3)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
cystic fibrosis
(3)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
cystic fibrosis
(2)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood
(2)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
cystic fibrosis
(2)
Treatment name(s)
Lumacaftor-ivacaftor
Perceived effectiveness
for cystic fibrosis (2 evaluations)
Total evaluations
2
Tried for
cystic fibrosis
(2)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with cystic fibrosis, who reported starting treatments within the last 5 years.
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Who has cystic fibrosis on PatientsLikeMe?
- 1316 patients have this condition
- 4 new patients joined this month
- 1174 say cystic fibrosis is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 166 | |
| 20s | 334 | |
| 30s | 312 | |
| 40s | 172 | |
| 50s | 116 | |
| 60s | 31 | |
| 70+ | 7 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 494 | |
| 20-29 years | 10 | |
| 30-39 years | 6 | |
| 40-49 years | 5 | |
| 50-59 years | 1 | |
| 60-69 years | 0 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 360 | |
| Female | 773 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 720 | |
| Not Diagnosed | 20 |
These charts show data from cystic fibrosis patients who have completed their condition history
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