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?
"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?
