Sunday, December 5, 2010

CF in a Nutshell

So, what is it? Here are some facts without getting too complicated and without having to read all the horror stories out there on the net:

  • Cystic Fibrosis is the most common life threatening, recessive genetic condition affecting Australian children. Both parents must be a carrier, you can't "catch" CF.
  • Around 10% of babies born with CF have "meconium ileus" - an obstruction in the intestines caused by thick, sticky baby poop. This requires surgery, which is what happened with Ruby.
  • In people with CF, salt and water aren't transferred properly from the cells, causing the body to produce thick sticky mucus.
  • It affects a number of organs in the body (especially the lungs and pancreas) by clogging them with the thick, sticky mucus. 
  • The mucus is a breeding ground for bacteria. Repeated infections and blockages can cause irreversible lung damage and premature death.
  • Mucus can also cause problems in the pancreas preventing the release of enzymes needed for the digestion of food, especially fats. Malnutrition can be a problem.  
So what do we do for Ruby?

  • Daily physio where we try to "knock the snot" out of her, is how I describe it.
  • She is on antibiotics until she is 18 months to give her a good head start of being healthy and strong, and hopefully not getting any chest infections in this time
  • Enzymes are given before every feed so her body breaks down food (milk). Otherwise it would just pass straight through her, nutrients and all
  • Salt is great for people with CF, so she is constantly breathing in the lovely salt air!
  • Excercise is also a very important part of keeping healthy as it prevents deterioration of the lungs and improves physical bulk and strength.
  • Regular visits to the CF clinic at Westmead
The life expectancy of a person with CF is 35 years. But don't let that scare you, this is double what it was 25 years ago, and is always increasing. There is no cure for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. With today’s improved treatment most people with CF are able to lead reasonably normal and productive lives. A great amount of time is being directed towards finding new and improved ways of treating CF and of finally finding a cure.

    1 comment:

    B.i.o-T said...

    With good management and love she'll have awesome quality of life and that's what counts!