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.
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Treatments taken by people with cystic fibrosis

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

(Albuterol Inhaler)
Type
Prescription Drug
How many have tried
6
Tried for
cystic fibrosis (6)
Treatment name(s)

(Pulmozyme)
Type
Prescription Drug
How many have tried
4
Treatment name(s)

(TOBI)
Type
Prescription Drug
How many have tried
4
Tried for
cystic fibrosis (4)
Treatment name(s)

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

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

(Morphine ER)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3)
Treatment name(s)

(Duragesic)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

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

(Vistaril)
Type
Prescription Drug
How many have tried
2
Tried for
anxious mood (2)
Treatment name(s)

(MucoClear)
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
Treatment name(s)

(Albuterol Inhaler)
Perceived effectiveness
No evaluations
Side effects
jittery feeling
Total evaluations
1
Tried for
cystic fibrosis (6)
Treatment name(s)

(Pulmozyme)
Perceived effectiveness
for cystic fibrosis (2 evaluations)
Side effects
sore throat
Total evaluations
2
Treatment name(s)

(TOBI)
Perceived effectiveness
for cystic fibrosis (1 evaluation)
Side effects
hoarseness
Total evaluations
1
Tried for
cystic fibrosis (4)
Treatment name(s)

(Zithromax)
Perceived effectiveness
for cystic fibrosis (1 evaluation)
Side effects
Total evaluations
1
Tried for
cystic fibrosis (3)
Treatment name(s)

(Pulmicort)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
cystic fibrosis (3)
Treatment name(s)

(Morphine ER)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (3)
Treatment name(s)

(Duragesic)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (2)
Treatment name(s)

(Flovent HFA)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
cystic fibrosis (2)
Treatment name(s)

(Vistaril)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood (2)
Treatment name(s)

(MucoClear)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
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?


Age
Age Proportion # of patients
<20 173
20s 337
30s 303
40s 169
50s 110
60s 30
70+ 7
Age at first symptom
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
Sex Proportion # of patients
Male 358
Female 766

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 719
Not Diagnosed 20

These charts show data from cystic fibrosis patients who have completed their condition history
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