Two Most important parts of the Cystic Fibrosis Foundation Website

Thursday, November 19, 2009
The CF Foundation’s website is chuck full of information, news, and assistance. However, for the CF newcomer, it might be just a tad overwhelming. There is a lot of information to get through because CF is a very complicated disease. However, there are two primary areas I would recommend when you’re starting out. The others can wait until your head has stopped spinning.

Most important part 1: About Cystic Fibrosis

Your doctor undoubtedly gave you at least a basic understanding of cystic fibrosis when you first met him or her. Don’t be embarrassed if you forgot most of that information. Who could blame you with all of reality crashing around you? Just know that your first source of information about CF is this website, in particular the About Cystic Fibrosis heading.


Most important part 2: Living with Cystic Fibrosis

A whole new world has opened up to you, and for the first time in your life, you really didn't want to see it. You vaguely remember hearing from the doctor about enzymes, breathing treatments, chest PT, and enzymes...wait, you already thought you heard that, right? Or was that something about clinical visits? Or man it's all running together!

It's ok. There's a lot to learn about living with CF, so click on the tab with that title on the CF Foundation website. Some of the stuff you need to learn ASAP. Some of it will come. Follow the doctor's orders, read the website's information, and move forward. You can do this!


When my wife and I first found out that our brand-new daughter had cystic fibrosis, our heads spun a little. We didn’t know what to do except pray, ask our friends to pray, and research as much as we could. You’ll do yourself a huge favor if you’ll start your research effort at the CF Foundation’s website, particularly with those two headings. The rest will come in time…I promise. Oh, and prayer wouldn't hurt you either.

2 comments:

Stephanie's Mommy Brain said...

Dan, this is a really great post!! We don't have CF in my family but I do have another chronic disease, Rheumatoid arthritis.

You mentioned the confusion that follows a diagnosis and how a doctor's instructions all run together. One tip I've learned for dealing with doctors and a chronic disease is to write down what the dr. says while you are IN THE APPOINTMENT or when you get to the car. This is super helpful, especially if you are the only adult at the appointment and when the new terms are super confusing.

You do such a great job on this blog. Keep up the good work!

Dan said...

Thank you for the encouragement Stephanie! I love your idea. I hope you don't mind, but I plan on writing more about that in the future as a separate post. Thank you for the idea!