Life with Cystic Fibrosis: Three Teenagers’ Perspectives

Unlike most of the health conditions we cover at PatientsLikeMe, cystic fibrosis is one of the few communities where the majority of our members are under the age of 29.  In fact, approximately 60% of our 440 cystic fibrosis patients report that they either fall in the 0-19 or 20-29 age brackets.

A Snapshot of the Cystic Fibrosis Community at PatientsLikeMe

What exactly is cystic fibrosis?  A hereditary disease, cystic fibrosis causes the exocrine (secretory) glands to produce abnormally thick mucus.  This can cause problems with digestion, breathing, body cooling and male reproduction, among other things.  Most people with cystic fibrosis are diagnosed by age 2, although some are not diagnosed until 18 or older.  (The latter individuals usually have a milder form.)

Cystic fibrosis is the most common genetic disorder affecting Caucasians in the US.  It is also the most deadly due to the respiratory complications that can occur.  According to the National Institutes of Health (NIH), millions of Americans – including an estimated 1 in 29 Caucasian Americans – carry the defective cystic fibrosis gene.  To develop the disease, however, a person must inherit two defective genes (one from each parent).

So what’s it like to grow up with cystic fibrosis?  Here’s what three teenagers had to say in a recent discussion in our Lungs and Respiratory Forum:

  • “I had never had any hospitalizations until the summer I turned 16. I was hospitalized for a ‘tune up’ which barely did anything that I noticed. I went back to living life as I normally did. In high school I was on the volleyball team, in two bands and kept up honor roll grades. This past year has been the worst health wise. I have been hospitalized twice and the discussion of a lung transplant has begun. I cannot believe how quickly I went from having an almost totally normal life to living everyday worried about my weight and lungs and health.” – Female, 18 years old
  • “I have some bad days but I’ve never been hospitalized.  This leaves me wondering what the feeling is like to be spending a lot of time in hospitals. I was diagnosed when I was 4, after my mum had tried to convince the doctor for 3 years that something was wrong with me. Without cystic fibrosis (CF), I don’t think I would be the strong person I am today. CF has made me who I am, but I am the only person with CF that I know.  No one in my family has CF so they rarely understand how different I feel, like an outsider sometimes.  But all they say is ‘don’t be stupid, you’re normal.’” –  Female, 17 years old
  • “I was diagnosed at about 3 days old, and I practically lived in the hospital until about 5. Then I was only in once in awhile. The past school year I started to get really sick. And I’m currently in [the hospital] right now. It seems to be every three months I’m admitted, and I always pack a bag on my way to the doc because I know I will be admitted. Life is hard, but I’m thankful it’s not worse. I got to play some sports, and I have my best friend who supports me with everything.  It sucks to see my sisters get up and go to school without worries, and complain about little things. But then again I wouldn’t want any of them to have this.” – Female, 17 years old

This is just a sample of the wealth of experiences and data to be found at PatientsLikeMe.  Dive in today to learn more about cystic fibrosis.

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4 thoughts on “Life with Cystic Fibrosis: Three Teenagers’ Perspectives”

  1. I have a 11 years son. He is patient cystic fibrosis.He is always ill. I don,t know what to do.He always need inhaler & medecin.(pancreatin 325 mg/ursodeoxycholic acid/propranolol hcl bp 10 mg/calcium d) .PL GIVE ME SOME ADVICE.

  2. Hi Krishna,

    I’m so sorry to hear your son is ill. Have you joined http://www.PatientsLikeMe.com? It’s a free community, and others there are sharing their experiences and offering support. Here are people on our site with CF you can reach out to. http://www.patientslikeme.com/patients?s%5Bc%5D%5B129%5D%5Bhas_it%5D=true

    Let me know if there’s anything I can do to help, or if you need some tutorials on getting around the site.

    Best wishes,
    Liz

  3. Hi,
    My son is 17 and was diagnosed at 3 days old. He had a bleeding ulcer at age 6 and then his first tuneup at age 8. He hasn’t had one since. Suddenly, last week he developed this bad husky dry cough and low grade fever. He may have to go in for his 2nd tuneup, have Any others out there been able to do part of the tuneup at home? Or does the child have to stay in the hospital the whole time? Please let me know. Thanks. And God bless!

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