M
Mommafirst
Guest
Since I was in your shoes only one year ago, I'm going to tell you things I continue to tell myself to have something to hold onto....
1. In the last 30 years, the median age for a CF lifespan has increased 30 years. 30 years in 30 years!!!!! That is progress!!!! There is nothing to say that when our kids reach their 30's that their life expectancy won't have reached that equal to the life expectancy of any other person in our society!
2. Pancreatic sufficiency is a good thing (my daughter is as well we think). Because there is a correlation between Body Mass Index and Lung Functioning, it is best to keep CF kids weight in the 50th percentile or better. Not that this isn't possible for those that are pancreatic insufficient, especially with the use of enzymes, but for those who are sufficient, it will be easier to stay at a healthy weight.
3. All kinds of drugs are in the pipleline that will continue to help improve the life of a CFer. Some of them are targeting specific mutation classes in an effort to "fix" the broken proteings. I believe that this type of specific drug creation will be part of even greater breakthroughs.
4. One last thing for you to hold onto. Your daughter has one clas IV mutation that is consider mild. Good news. And her other mutation is THE most common mutation around -- you've gotta figure that the one that accounts for nearly 60% of all CF cases is going to be highly targeted in specific drug studies.
I know the despair you feel right now. I wish I could reach through the screen and help you in some way. Its all a process. You have to live it. Unfortunately you have no choice. But I promise you, one year ahead of you in the process, it does get easier.
1. In the last 30 years, the median age for a CF lifespan has increased 30 years. 30 years in 30 years!!!!! That is progress!!!! There is nothing to say that when our kids reach their 30's that their life expectancy won't have reached that equal to the life expectancy of any other person in our society!
2. Pancreatic sufficiency is a good thing (my daughter is as well we think). Because there is a correlation between Body Mass Index and Lung Functioning, it is best to keep CF kids weight in the 50th percentile or better. Not that this isn't possible for those that are pancreatic insufficient, especially with the use of enzymes, but for those who are sufficient, it will be easier to stay at a healthy weight.
3. All kinds of drugs are in the pipleline that will continue to help improve the life of a CFer. Some of them are targeting specific mutation classes in an effort to "fix" the broken proteings. I believe that this type of specific drug creation will be part of even greater breakthroughs.
4. One last thing for you to hold onto. Your daughter has one clas IV mutation that is consider mild. Good news. And her other mutation is THE most common mutation around -- you've gotta figure that the one that accounts for nearly 60% of all CF cases is going to be highly targeted in specific drug studies.
I know the despair you feel right now. I wish I could reach through the screen and help you in some way. Its all a process. You have to live it. Unfortunately you have no choice. But I promise you, one year ahead of you in the process, it does get easier.