A Kid's Point of View: Living with CF


New member
Living with CF is extremely difficult. I am 13 years old (turning 14 in may!) and I have it (obviously). I am depressed and sometime wonder if its even worth it to live.

I miss school a lot ( I am in eight grade and don't even know how to do the problem 198/34. I am failing in algebra. I cough in class. People think I'm diseased (okay, so I am). But they think I'm contagious. Boys make fun of my cough (which is pretty ridiculous if you ask me, seeing how its more annoying than offensive). I've been in the hospital about 20 times on my life for two weeks each.

I can't take this life sometimes. I mean, would you be able to deal with taking 10+ pills a day, two vest treatments for 30 minutes each, clinic visits every two months, having a g-tube that you have to get extra supplements put in you because you can't put on weight, oxygen at night, difficulty breathing (there's more, much, much more)? Not to mention a dad who is trying to get custody over you when you don't even like being around him because he's mentally abusive and unpredictable, also, you have bipolar and extreme depression, and a stepdad who treats you very unfairly. Plus, every teenage girls nightmare; NO BOOBS!:p

But I'm on kalydeco, a new med that only helps about 3% of patients with cf, and I have a goal for the future. Get a scholarship to UCLA, graduate, become a famous actress, and open up a cake shop. People tell me my expectations are too high, but like it says in one of my many favorite musical (wicked), "I'm through accepting limits, cause someone says they're so. Somethings I cannot change, but till I try I'll never know..."

Wish me luck, and email me if you have any questions that need a kids point of view!