Secrets of Living with Cystic Fibrosis

If you are reading this article, you probably already know about the symptoms, causes and treatments of cystic fibrosis, commonly referred to as CF. Most likely, you or someone you know has been diagnosed with this hereditary, chronic disease. Since you know the basics already, let's concentrate on some ways that might make life with CF a little easier to live with on a day-to-day basis.

My aunt adopted a little, four-year-old girl named Sara that had been diagnosed with cystic fibrosis a year earlier. I'm going to tell you a few things I learned from her that might help someone else. Some of these things are well-known tips, and others might be something you've never heard of, but if it helps, then it doesn't matter if it is new or old.

1. Because Sara's body wasn't able to absorb all the vitamins and nutrients that it needed, we made sure that everything she ate contained lots of calories and lots of fat. Her favorite food quickly became anything that had a creamy sauce or gravy on it. There were always plenty of snacks close by.

2. Lots of fresh air! Lung and respiratory infections were a regular part of Sara's life, but a child needs to play outside. We found that she breathed better and suffered fewer infections when she played outside after it rained. I suppose this was because the rain washed a lot of the germs out of the air.

3. Exercise. It's really important for anyone with CF to keep their body in good shape, keeping stamina and muscles built up. My aunt got a puppy for Sara, and right away we started seeing a difference in her. She loved running and playing with her new friend. As the days went by, we noticed that each play time was lasting longer and longer. She seemed to be getting stronger every day!

4. Air pollution! This was a big issue with Sara. There were just so many contaminates in the air that aggravated her breathing. Much of the time she had to wear a paper mask. She thought it was hilarious when we would draw funny noses and lips on them! Her favorite was the kitty cat whiskers. If someone asked her a question, her answer would always "Meow" when she wore that mask.

5. Contact with other CFers. At the clinic where Sara was seen regularly the staff tried to keep the CF patients away from each other to prevent cross infections. Sara invented her own game, similar to Hide and Seek, to play on clinic days. Her favorite hiding place was behind a large potted plant, where she would hide until someone came within 10 feet of her. She'd jump out and say, "Are you a CF?" If the answer was yes, they'd both hide at opposite ends of the room. If the answer was no, she'd frown and go back in "hiding" until the next person came by. The object was to see who could put the most CF kids in hiding. (This clinic was for children with CF and most of the kids here knew each other from many clinic visits and called each other my "across the room" friend.)

Most children get bored easily when they are sick and depend on you to entertain them. Children with cystic fibrosis need even more entertaining time, because they are usually sick much more often. However, CF children are very enterprising at coming up with ways to entertain themselves. After all, I've always heard that "Laughter is the best medicine," and in Sara's case, it seemed to be true. Just to hear her laughter brought a smile to everyone's face!