My Facebook rant to all those people who annoy me about Cystic Fibrosis


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To those of you who don't know what Cystic Fibrosis is, here's the definition from the CDC:
"Cystic fibrosis (CF) is a chronic, progressive, and frequently fatal genetic (inherited) disease of the body’s mucus glands. CF primarily affects the respiratory and digestive systems in children and young adults. The sweat glands and the reproductive system are also usually involved. On the average, individuals with CF have a lifespan of approximately 30 years.
CF-like disease has been known for over two centuries. The name CF of the pancreas, was first applied to the disease in 1938."

Hugest pet peeve is when people ask "Is your disease getting better?", or when they say "Medicine now a days is so good, you'll live a very long time."
CF is progressive, a term people cannot seem to understand. Progressive means it gets worse and worse, it doesn't get better and better. If you ask me 5 years from now how my health is in comparison to now, its not going to be better. Period. Medicine for CF doesn't cure CF, all it does is slow down its progression. Thanks to "modern" medicine, the life expectancy has risen from 30 years old, to a whopping 37.5 years old.
The only drug that is currently out that has significantly helped CF is a drug called Kalydeco (which is only available to certain types of CF, for example, I have two variations of Deltaf508, the most common form of CF, sadly Kalydeco doesn't treat this form of CF, it only helps people with the R117H mutation. Kalydeco is NOT a cure. Just a really good advancement).
Sadly, the cost of this drug is $300K a year. Making it more expensive than cancer treatment, and the most expensive drug in the world.
End of rant o_o

So that was my rant. Anyone else say anything similar on a social network or to friends or family?

I feel as if my own dad doesn't even understand the seriousness of all this. He doesn't even know the name of my enzymes i take (creon). My mom does and is the only one in my life who understands it. i hate it. i really do. does anyone else agree with my social network rant?
I understand what you are saying Enzo. I don't know how it is to actually have CF but I wish I could take it in place of my son. I understand about the Kalydeco cost. It worries me that if my son is on our insurance or insurance he has through his employer when he is 26 that them seeing the cost of Kalydeco would be a reason for them to find a reason to get rid of him. The cost is outrageous and I feel the CFF should be working on this seriously to get the cost down somehow. Everyone who is on Kalydeco could potentially be discriminated against even though it is not "lawful" to do so. They find a way. The reasons employers state would be to cover their own self so it wouldn't be stated it was because of insurance cost. My sons dad is the same way as yours. He is not involved in it all but that doesn't mean he doesn't care - or that your dad doesn't care - as I know my sons dad would do anything for him. I am sorry you have to live with this disease and all it brings to your life. Sorry I'm posting on this thread as I am a mom and not a teenager or even a young person. :D


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One day, perhaps, the world will adjust to your way of thinking. Until then, it would be better for you if you would just accept the world as it is.



Enzo, I agree with everything you are saying. Stay as healthy as possible and know that research is moving in a better direction because more patients like you are frustrated and taking on challenges to create better therapies on their own. In the meantime, go buy a Nutrabullet and throw brightly colored fruits and veggies in there. Drink fresh smoothies full of plant phytochemicals every day. This will help.

In the meantime know that researchers are formulating better drugs :) . Exercise like a fiend, eat brightly colored fresh stuff, do your therapies... and you will be in better shape to benefit from what's coming.

Cystagon (cysteamine) has created quite a stir. I believe it's action is antimicrobial/mucolytic and it doesn't do much to correct/potentiate/compensate for CFTR function. That doesn't mean it's not an effective CF drug.

Things are happening...
Hey, sometimes a rant is in order. Allow yourself to have all those feelings, and then, like Cardinal says above, fight, fight, fight. Also, remember that most people don't know about CF, so they ask dumb questions and pretend it doesn't exist. They're just scared they'll lose you. Be patient, and carry on with your own life. Good luck. I'm here if you need me.