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.
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