Sunday, March 27, 2011

Lack of Understanding

I'm sure people wonder why I would start a blog about life with Cystic Fibrosis, and I have touched a little bit on some of my reasons in earlier posts. In reality, there quite a few reasons to start this. I was talking with my mom the other day, and one of those reasons that I hadn't really thought about before became extremely clear. Through talking with people and hearing the questions that are asked about the disease, I have noticed that the information presented to those who are not affected by CF is very limited and often times, flawed. My mom is a dental hygienist, and she talks to her patients about my sister and I all the time. It is truly amazing how many people ask her how I am doing with my CF, and then follow up with a statement like, "Oh, I'm sure she will get over it soon," or "She will grow out of it." This, of course, is not in any way them being insensitive. It is just an honest lack of understanding of what Cystic Fibrosis truly is. I have also had people ask when I caught CF. There have been times when people were scared that they would catch the disease if they were around a person with it. That isn't common now, but I'm sure it is still out there.

I want my blog to serve as a place to find real life information about Cystic Fibrosis. Most of the stuff on my blog is not about science, but it actually paints a picture of what life is like with CF. I have found that a lot of times, when I tell someone that I have CF, they want to know what it is, but they really want to know what it means to have it. What kinds of medications do I have to use? What worries does having the disease cause? The big question: How long will you live? (Obviously, I don't have the answer to that question, but I know it runs through people's minds.) I have made it my goal to answer those questions and any others that people may have about Cystic Fibrosis, because people need honest answers especially when so many resources portray it inaccurately.

The first example of this that comes to mind is the Grey's Anatomy episode which I wrote about earlier. That is a very popular show that has a lot of influence over it's viewers. The least they could do, was research the material and make it educational as well as entertaining. I found one really surprising inaccurate portrayal of CF in my honors biology text book freshman year of high school. There wasn't much about it, but it did have a little section about the controversy that supposedly surrounds giving CF patients new lungs. The author reported that some people think that it is wrong to give those patients healthy lungs when the lungs will just clog right back up with mucus. Now, I am definitely not an expert on lung transplants, because I have not done a ton of research on it, but it is my understanding that once you get new lungs, they stay clear. The issues and worries come with rejection and catching illnesses. (Please correct me if I am wrong, and add anything that I haven't mentioned if you have anything else.) I was horrified when I read it, because back then, I knew even less about the topic than I do now. I was upset, because I didn't like the idea of going through a transplant, and then just getting right back to how I was. If I was fooled by the information being presented, it is a pretty safe bet that every student who read that section was. I find it very disturbing and sad to know that there were (I'm not sure if those books are still being used) educational text books spreading untrue things about CF to students.

So basically, I want to start to change all of that. I want to offer information to people so that misconceptions are less, and my friends and family can really understand what it is that I live with. If you have any questions or comments, or just want to talk to me about issues with CF, please feel free to email me by clicking here!

1 comment:

  1. Great post. I definitely think you are doing just that with your blog. It is amazing how little awareness there is about CF. And, you are correct about the lung transplant. I am post-transplant. Once you get new lungs, CF does NOT exist in your lungs. They are completely clear of it. You do still have it in your sinuses and digestive tract. And the main concern post-transplant, like you said, is rejection and catching colds/illnesses like pneumonia due to a compromised immune system. Rejection can be treated now, and most centers do a really good job of monitoring it and treating it aggressively if it happens. If a CF person dies post-transplant, it is usually due to a severe case of pneumonia or other bacterial infection. Hope that helps! I really enjoyed this post.