May is Cystic Fibrosis Awareness Month. This is wonderful news; cystic fibrosis needs to be brought into the spotlight in order to attract more donors and fund more research. I’m somewhat stuck in a paradox when it comes to my cystic fibrosis. I live in a small town where everyone knows everything about everyone else, right down to his/her blood type and driver’s license number. So I would think that people would freely raise awareness for cystic fibrosis, knowing that someone in their little community would benefit. On the other hand, since cystic fibrosis is so rare (only about 30,000 people in the United States have CF), most people in my area of the world don’t know anyone besides my family and me who’s been affected by it, so they may choose to support other charities. And therein lies my frustration.
I would really like to see cystic fibrosis get more publicity, but some other diseases are much more familiar to the ordinary person than CF is; cancer, asthma, muscular dystrophy, etc. These seem to take up the general public’s awareness and charitable feelings, leaving little room for CF to get recognized and receive donations. I have to admit that I kind of resent this. For example, when I see all the windows at my local grocery store overflowing with paper ribbons representing dollar donations for other illnesses, I feel saddened; when it comes time for the CF ribbons to be sold, they barely cover one window pane. It’s hard to see this without feeling a lump in my throat. I just wish that more people understood the disease with which I live; I don’t want every cough of mine to be confused with a severe cold, I’d like to be able to huff and puff while climbing a set of stairs without people assuming I’m smoker, and life would be SO much easier if the majority knew that CF entails much more than coughing and taking handfuls of pills.
Perhaps it’s my own fault, however, that my community is only now learning about my cystic fibrosis. Until I got to high school, I refused to talk about CF. For some reason, I was embarrassed to have been born with something so serious, something that I didn’t understand- I didn’t know why I had to do so many treatments, take so much medication, and have so many appointments with my doctor. I hated that part of me, because I viewed it as a weakness. When I developed CF-related Diabetes just before my Freshman year, though, I could hide it no longer. So I began to explain what was really wrong with me, and dispelled so many rumors about cystic fibrosis and the role it played in my life. Now I want to shine a light into every dark corner of CF so it can be fully comprehended, and so those with CF can be understood in turn.
I think one aspect of CF that is most misinterpreted is the life expectancy of CF patients. The truth is, it’s disconcerting to think that had I been born even 5 years sooner than I was, my final days might have been upon me right about now. In fact, it was only in the 1950s when those born with cystic fibrosis weren’t expected to live long enough to begin elementary school. The median life expectancy does improve slightly with each year that passes. Right now, about half of all CF patients survive beyond their late 30s to early 40s, which obviously means that half don’t. And meanwhile, we get sicker. This is unacceptable, and I feel the need to educate people about CF so more people will donate to CF charities that are working on a cure.
So, this month, I want to ask everyone to think of cystic fibrosis and the people that are affected by it. Make yourself more aware of this shitty disease; visit any of the following websites to learn more about cystic fibrosis, and how/when you can help the cause.
http://www.cff.org/ -An awesome website with everything you could ever need to know about CF, as well as a link where you can donate.
http://www.cysticfibrosis.ca/about-cf/what-is-cystic-fibrosis/?lang=en -This site is from Canada, but still has some great information about CF.
http://www.cysticfibrosis.org.uk/ -This site is from the UK, but it’s very useful and has lots of important information about CF.
Go to http://blausen.com/?Topic=9262 to see a short video about CF.
I know you’ve had a tough road and I know it won’t be any easier for you going forward. If it helps at all, I’ve spent many hours educating myself on all aspects of CF because you are such an inspiration. You’re such a strong human being. Keep your head up, ppl will come around and start to give to help find a cure. I’ll post your websites at work for my colleagues to see. You are always in my thoughts. Stay strong…
You are in my thoughts and prayers and I will make a donation on your behalf.