Cystic fibrosis

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 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

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 cystic fibrosis

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

(Orkambi)
Type
Prescription Drug
How many have tried
3
Tried for
cystic fibrosis (3)
Treatment name(s)

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
2
Tried for
cystic fibrosis (2)
Treatment name(s)

(Pulmozyme)
Type
Prescription Drug
How many have tried
2
Treatment name(s)

(Cannabidiol CBD oil)
Type
Other
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Cipro)
Type
Prescription Drug
How many have tried
1
Tried for
cystic fibrosis (1)
Treatment name(s)

(Clindamycin PH 1% Gel)
Type
Prescription Drug
How many have tried
1
Tried for
cystic fibrosis (1)
Treatment name(s)

(Colomycin)
Type
Prescription Drug
How many have tried
1
Tried for
cystic fibrosis (1)
Treatment name(s)

(CoughAssist Mechanical Insufflator-Exsufflator)
Type
Equipment
How many have tried
1
Tried for
cystic fibrosis (1)
Treatment name(s)

(Flovent)
Type
Prescription Drug
How many have tried
1
Tried for
cystic fibrosis (1)
Treatment name(s)

(Perforomist)
Type
Prescription Drug
How many have tried
1
Tried for
cystic fibrosis (1)

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

Compare treatments taken by people with cystic fibrosis

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

(Orkambi)
Perceived effectiveness
for cystic fibrosis (2 evaluations)
Side effects
acne fatigue 3 more
Total evaluations
2
Tried for
cystic fibrosis (3)
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
No evaluations
Side effects
jittery feeling
Total evaluations
1
Tried for
cystic fibrosis (2)
Treatment name(s)

(Pulmozyme)
Perceived effectiveness
for cystic fibrosis (2 evaluations)
Side effects
coughing up blood (hemoptysis) excess mucus 1 more
Total evaluations
2
Treatment name(s)

(Cannabidiol CBD oil)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Cipro)
Perceived effectiveness
for cystic fibrosis (1 evaluation)
Side effects
change in taste diarrhea
Total evaluations
1
Tried for
cystic fibrosis (1)
Treatment name(s)

(Clindamycin PH 1% Gel)
Perceived effectiveness
for cystic fibrosis (2 evaluations)
Side effects
Total evaluations
2
Tried for
cystic fibrosis (1)
Treatment name(s)

(Colomycin)
Perceived effectiveness
for cystic fibrosis (2 evaluations)
Side effects
Total evaluations
2
Tried for
cystic fibrosis (1)
Treatment name(s)

(CoughAssist Mechanical Insufflator-Exsufflator)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
cystic fibrosis (1)
Treatment name(s)

(Flovent)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
cystic fibrosis (1)
Treatment name(s)

(Perforomist)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
cystic fibrosis (1)
  • 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.
Last updated:

Who has cystic fibrosis on PatientsLikeMe?

  • 1 new patients joined this month
  • 1197 say cystic fibrosis is their primary condition

Age
Age Proportion # of patients
<20 141
20s 316
30s 336
40s 187
50s 127
60s 45
70+ 11
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 493
20-29 years 10
30-39 years 6
40-49 years 6
50-59 years 1
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 366
Female 794

Diagnosis status
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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