Cystic Fibrosis Awareness

May is Cystic Fibrosis Awareness month!  Since I didn’t know anything about CF before I met Jesse, I thought I would share some important information.

What Is Cystic Fibrosis?

The Cystic Fibrosis Foundation has lots of information explaining what CF is and how it is passed down:

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Wikipedia is also an easy source for more information:

Cystic fibrosis is a disease which affects the entire body. The name cystic fibrosis refers to the characteristic scarring (fibrosis) and cyst formation within the pancreas, first recognized in the 1930s. Difficulty breathing is the most serious symptom and results from frequent lung infections that are treated with, though not cured by, antibiotics and other medications. A multitude of other symptoms, including sinus infections, poor growth, diarrhea, and infertility result from the effects of CF on other parts of the body.

CF is caused by a mutation in the gene for the protein cystic fibrosis transmembrane conductance regulator (CFTR). This gene is required to regulate the components of sweat, digestive juices, and mucus. Although most people without CF have two working copies of the CFTR gene, only one is needed to prevent cystic fibrosis. CF develops when neither gene works normally. Therefore, CF is considered an autosomal recessive disease.

CF bandsJesse and I are raising both awareness about cystic fibrosis and money to donate to the Cystic Fibrosis Foundation by selling purple CF bands.  If you haven’t bought yours yet, be sure to get one to show your support!

I’ll share more about CF over the next couple of weeks.  Or you can check out the Cystic Fibrosis Foundation to learn about the work and advancements being made towards finally finding a cure for CF.

I Outrun CF

Yesterday Jesse and I participated in the Outrun CF Virtual Race.  Hundreds of people across the country signed up.  Everyone mapped out their own course near their house.  It’s so neat to think that so many of our CF friends were participating in this cause at the same time.  Check out the Outrun CF facebook page to see how others ran their race.

Outrun CF

How did we outrun CF?  Well, we actually walked.  Jesse has a nasty sinus infection that is slowing him down a bit lately and I wasn’t feeling too great myself so we determined that running wasn’t the best idea for us.  But we still wanted to be in on the action.  We put on our running shoes and did a lap around our neighborhood.  That’s what was so great about this race, no expectations about how far or fast you needed to go.  Everyone participated to the ability that they were able to prove that CF was not standing in the way of what they wanted to do.  We are definitely looking forward to future races where we can push ourselves a little harder.

Salt Rooms

Salt roomBreathing Clear salt therapy just opened in Tampa. They had an open house tonight, so we went to check it out.

I had read about people using this therapy on the CF boards.  Breathing the salt air is supposed to help all sorts of respiratory conditions.  But the closest one was about a two hour drive away so I had put it out of my mind.  Then I started seeing commercials for one opening close to us and was curious to see what it would be like.

I was a little disappointed at how small the place was.  It was a super tiny office crowed with a ton of people.  I was expecting a larger place, but there was only one adult room with two chairs and one kids room with one chair and a sandbox with some toys.  I also thought we would get to sit and see what it would be like if we did buy a session, because they were a little expensive.

They did have good food and drinks!  And we liked that the walls were made out of salt bricks.  Maybe we will win a free session so we can try it out.

Has anyone tried going to a salt room?  Does it really work to help CF or my allergies?