why do i do this?
i have an obsession with childhood illnesses. and i'm not talking about chicken pox. for some reason, i am fascinated with life-threatening diseases, like diffuse intrinsic pontine glioma and cystic fibrosis-diseases that will quite possibly guarantee a early death sentence.
i made the mistake of picking up (again) alex: the life of a child. so i got curious as to what the life expectancy is for CF kids these days, since in 1975 it was pretty abysmal.
so i was doing some research, and i thought i'd see what was up on youtube regarding this disease. why read about it when you can see it motion? so i found this video:
the life expectancy is now 35. 35. that's how old i am. if i had CF now, even in the best of care, i would probably be on my last lobes by now. some people get it worse than others, which affects your life span. also, early diagnosis is key, to reduce the amount of damage done to your system. the blonde girl, siobhan ryan, was diagnosed when she was 3. that seems really late. 3 years with no treatment, no medication, no preventative measures.
right after that show was posted, siobhan died.
then there's a more ravaging monster called DIPG. this is a brain stem tumor that occurs in children between the ages of 1 and 15. if you get this diagnosis, you will probably be dead within the year. A YEAR. it's inoperable, there's no cure, no real treatment. once it's diagnosed, the docs will give you radiation and chemo, like regular cancer. they'll keep an eye on it. it will maybe stop growing or shrink from some other medications. then it will come back. and after that, you're screwed. your eyes will cross as the tumor destroys your nerves. you'll lose feeling in one side of your body, reducing the use of the hand, foot and leg on that side. and the headaches. let's not forget about the headaches.
and the people who usually get this cancer have only been potty trained for maybe 5 years. maybe.
really? who thought of these things? and i sit here and dream of finding the way to operate on that tumor. i dream of finding a way to make those defunct genes to knock that chloride and sodium thing off in CF. i dream of fixing the gene to muscular dystrophy. but i'm 35. is it too late for me to do anything for these kids?
of course, CF and DIPG kids would embrace the time i have. maybe i should, too.
a shout out to the blogs that i read:
CoolCole (age 9)
nicky lee (age 7, died September 2, 2009)
brianna sharp (age 14)
sara hines (age 14, died july 2, 2008)
mara adams (age 6. died september 22, 2008)
and if you're feeling particularly jaunty, give some money or time:
http://cff.org/
i made the mistake of picking up (again) alex: the life of a child. so i got curious as to what the life expectancy is for CF kids these days, since in 1975 it was pretty abysmal.
so i was doing some research, and i thought i'd see what was up on youtube regarding this disease. why read about it when you can see it motion? so i found this video:
the life expectancy is now 35. 35. that's how old i am. if i had CF now, even in the best of care, i would probably be on my last lobes by now. some people get it worse than others, which affects your life span. also, early diagnosis is key, to reduce the amount of damage done to your system. the blonde girl, siobhan ryan, was diagnosed when she was 3. that seems really late. 3 years with no treatment, no medication, no preventative measures.
right after that show was posted, siobhan died.
then there's a more ravaging monster called DIPG. this is a brain stem tumor that occurs in children between the ages of 1 and 15. if you get this diagnosis, you will probably be dead within the year. A YEAR. it's inoperable, there's no cure, no real treatment. once it's diagnosed, the docs will give you radiation and chemo, like regular cancer. they'll keep an eye on it. it will maybe stop growing or shrink from some other medications. then it will come back. and after that, you're screwed. your eyes will cross as the tumor destroys your nerves. you'll lose feeling in one side of your body, reducing the use of the hand, foot and leg on that side. and the headaches. let's not forget about the headaches.
and the people who usually get this cancer have only been potty trained for maybe 5 years. maybe.
really? who thought of these things? and i sit here and dream of finding the way to operate on that tumor. i dream of finding a way to make those defunct genes to knock that chloride and sodium thing off in CF. i dream of fixing the gene to muscular dystrophy. but i'm 35. is it too late for me to do anything for these kids?
of course, CF and DIPG kids would embrace the time i have. maybe i should, too.
a shout out to the blogs that i read:
CoolCole (age 9)
nicky lee (age 7, died September 2, 2009)
brianna sharp (age 14)
sara hines (age 14, died july 2, 2008)
mara adams (age 6. died september 22, 2008)
and if you're feeling particularly jaunty, give some money or time:
http://cff.org/
posted by mikraas at 9:42 PM
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