School

Casey_Wilson

New member
I miss about half if not more of the school year and I was wondering if it will just get worse in the years to come because I'm going into the seventh grade everyone at school is very supportive and when I'm at school I'm sick they also gave me a survivors award and I heard the life span of a person with CF is either 31 or 35 but I really can't remember.
 

Aboveallislove

Super Moderator
Dear Casey,
Everyone is different and I've read lots having tough spells around your age and then later doing much better. Also, in case you don't know they are really close to a medicine that can help lots with CF do better. Do you know what mutations you have? If you post I can give you more info. And that life span age is closer to 37 now but that is a median with more than half of folks being older and many much older and that is based on yesterday's science. Today's is much better and within 5 years the drugs will be even better. Many who are in there 30s now were told the life span was 18 when they were your age,. So for now keep up with your treatments and what the doctors and your parents while they work on those drugs.
 

RobinB29

New member
It's nice that folks are being supportive, people in my school were not supportive. One of the things I did that helped me in high school was an IEP that allowed me to stay home on Wednesdays. It gave me a break to rest up, the teachers have me my work on Tuesday and I turned it in Thursday and made up any tests or quizzes when I could. It also helped ensure the school couldn't penalize me for absences. IEP stands for Individual Education Plan and is set up through the guidance counselor and it also ensures if you ever have a jerk teacher they HAVE to allow you as much time as you need for make up work. I also had snacks available in the office I could go eat and a standing arrangement to go nap in the nurses office during free periods if I needed to. In middle school I had a free period scheduled right after my lunch that was actually an extended lunch so I could eat a second lunch or just spend time in the bathroom if I was having a rough day. I'm happy to hear your school is supportive but never assume they will be, plan and don't be afraid to ask for what you need.
As far as the average age, I hate to say what everyone always says but it's true- no one knows how long they have. In school when I was younger I bounced back and forth between feeling like there was no point to an education when I'd never have a career and then feverishly wanting everything I thought I might not have time for. What I came to realize is that once my body wasn't using calories to grow, my CF stuff leveled out for many years and I worked in libraries for ten years before I ended up having some health stuff (Celiac disease) that's put me at home for a bit. In the meantime I am finishing my bachelors and have 2 sons and I'm on my second husband. (second and last) Life happens and sometimes CF will get in the way, just know you aren't just a survivor, you're a person with a future and the power to make things happen.
 

Printer

Active member
Casey:

I have CF also, I'm 74. I was a lifeguard on an Atlantic Ocean Beach for five years. I played college varsity basketball (but not well). I am college educated and have been married for 51 years.

This site has a ton of CF Patients over 50. Don't let anyone tell you that you will only live to your mid 30's.

Bill
 
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