Yep. first they told me a cure in 10 years, then it was all oral meds, no cure. hmmm, I guess I accept

do not Ever forget the mother who ran every day with her two teenage sons with CF. She lost both of them.

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Maybe it’s just my English but your posts often confuse me which is why I rarely respond. I know you’ve said before I don’t but that’s why. Sorry.

it’s okay, Ish.
I’ve been told this before, that I never explain.
I’ll try.
this post is about my daughter’s cystic fibrosis,
or others who have died young.


I fear we may have peaked in medicine.

There seems to be very little positive break throughs that I have seen hit main stream media

In the UK the news for the last 7 years has been Brexit, Covid, Ukraine

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yeah, but here, you see all kinds of commercials
for drugs for everything under the sun.
then they always give the disclaimer
of all the bad things that can happen,
or side effects.
wish we could hear about a cure
for major illness.
I’ve done so much fund raising for CF.
for a cure.
at least they got the pills now,
extending lives.

A childhood friend had CF. She was so sweet. She eventually was able to get a double lung transplant, but died of an Infection two years later. Was a waste. She was only 22.

heard many of those stories.
thanks for sharing.
don’t know if she came from money,
but typically, or had been,

the CF’er has to raise over half the money
for a lung transplant.
I’ve given a lot.

my daughter might need a liver transplant
someday. she’s been on meds
for that since a baby.
it affects the whole body.

No, she didn’t. Her parents saved for it her whole life.

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My friend’s mom died of CF.
Healthcare is free in Denmark, but she couldn’t get a transplant. Her case was too severe they feared the CF would take the new lungs too.

Watching her mom slowly die like that really messed my friend up.

She’s a sweet, quiet girl.

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