Isingsongsandshit
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We lost Kayla Gilbert tonight, she was a true champion, a warrior, cystic fibrosis is no joke and she did more in her peril than she had to, rest easy, you're a saint....
Give if you can, or share for awareness
Donation link in the Facebook description
https://m.facebook.com/story.php?story_fbid=1146977845349913&id=184965221551185
BravoBuzzard
Cystic fibrosis is a mother fucker.
quicksilver1
Lay 65 roses in her honour.
triathlonandtoddler
I went to college with you Kayla. I've been watching your journey on Facebook and was so shocked to learn you passed. Lots of love from me
gtothehizzle
Trammel
My daughter has CF. She's the strongest person I know. Prayers to you and yours.
Glitchyypants
May she rest in piece
DocHerb87
Cystic fibrosis is a horrible disease
Nubasaur
ugh. ive lost 2 friends to CF and my wife has it. shit is terrible. BE AN ORGAN DONOR! and if you have cf TAKE YOUR MEDS.
LionSundress
65 roses
meerple
Yo be an organ donor. Do you really need your lungs when you're dead? You could save someone.
dwheatley20021337
God bless from the UK I feel you pain my dear
WigglesTheHoly
My cousin, wife, and brother in law all have CF. Couldn't stand being helpless so I started a Charity event 3 years ago. Shit Sucks.
CotterPyke
CF "t causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, and bronchi 2/
CotterPyke
... and often resulting in respiratory infection."
glamsquanch
I shared s hospital room with a girl who had CF. It was devastating to watch
devytigress
65 roses x
thebestimgurian
"Donation link in the Facebook description" ...
MRCRAWFISH
She was beautiful. Rest in peace. Sorry for your loss.
ThisIsLiterallySatan
krissypoojackets
I’m sorry.
4goodsuccess365
My prayers and condolences go out to you. She looks much like my daughter who went to be with the Lord about this time last year as well.
sowasvonsowas
Eternal rest grant unto her and let perpetual light shine upon her. May she rest in peace. ♥
WhimsicallyWow
One of my dear friends lives with CF. This breaks my heart.
thenoisegeorgemichaelmakeswhenannbreaksupwithhim
my godfather died of cf. an awful, awful slow death :/
MouthSpiders
I lost a close friend to CF last year. I miss her very much, every day.
sbi5ar
I work trying to find new ways of combating infections in CF patients... See and read these stories all the time and it never gets easy :(
Nubasaur
mind if i ask who it is you work for and what mutations you are working on primarily?
sbi5ar
I'm based in the UK and I'm looking specifically at new antimicrobial agents to inhibit infections as opposed to the gene therapy side.
Nubasaur
mrsa and pseudomonas are cocksuckers, i know that. keep up the good work.
VizenFatale
She looks so young...too young to die. Worst part of my job. Sometimes I cry in a storage closet when I can't save someone.
Spaceqowboy
Fuck CF. I’m in the same shitstorm. She will always be a fucking warrior. Respect.
MikeTheRipper12
Me too. I got a double lung transplant 4 years ago.
Spaceqowboy
I was dePendant on ECMO ,in icu, waiting for LOTX, but miraculously recovered. Now pretty ok. Even living without o2.
Spaceqowboy
How’s life after LOTX? Better? How did u exeperience it? Questions... questions...
MikeTheRipper12
It's better, definitely. No issues with the lungs, but I have problems with potassium retention. It's hard though, it's hard to know
MikeTheRipper12
It's a lot to get used to being so vulnerable to other people having minor head colds and any child.
MikeTheRipper12
Who will react well to the surgery or not, or have kidney/liver issues, or of the steroid induced diabetes will go away or not. Though it
clucastate1
Me too
Spaceqowboy
Cheer up. Keep fighting. Take good care of yourself.
ignimbrite
She shall live forever in Valhalla, shiny and chrome.
dryerlint777
Pretty sure you have to die in combat to go to Valhalla, not "fighting disease x."
Megarith
Combat and Childbirth, wasn't it?
Highfarm
Yep and the valkyries would take them there after the battle was over
ignimbrite
https://www.youtube.com/watch?v=XwvCidRWYr0
[deleted]
[deleted]
dryerlint777
That's a nice thought but it doesn't really change the mythology now does it.
ignimbrite
To be fair, my original post was a Mad Max reference
ForestRed
If you die of old age/natural causes or disease you go to Helheim (which is NOT like the Christian Hell) according to the mythology.
Zyyky
What a load of cringey nonsense.
hertz18360
You should be in a sea of upvotes. Good on you.
rageforward
God please let there be somewhere an "Elon Musk" for these diseases who's just waiting to grow up and show himself.
frowardd
praying for the wealthy to deign to care enough to give us the research funding we need.. thats peak capitalism..
JohnnyLawlessEsq
There has already been tremendous progress. I'm 32, and even as recently as when I was a little kid, people with CF weren't even (1)
JohnnyLawlessEsq
expected to *get into* high school, let alone college. Obviously there's a long way to go, but we've come a long way, too.
QuantumSp3ctral
WHO downvotes these type of comments!?!? Stupid heartless idiots!
HighlySexualLobster
Taxes, and public funding for medical research. Waiting on the next Muskie/Batman/Jesus is basically offering thoughts and prayers.
QuantumSp3ctral
It’s a hopeful comment, just because someone has hope doesn’t mean they don’t actually do anything.
aRandomViking
He’s a huge role model of mine! Im going for electrical engineering to hopefully revolutionize the medical devices! Hope it relates to disea
MERGATROYDER
I think there’s a teen girl somewhere that is actually working in the medical field that is trying just that.
Lambourtitty
trying what?
Fumbleskunk
Links?
Radix865
Too bad we only get people like Martin Shkreli on that area nowadays.
NeoHelios
Downvote me if you want but I’d rather have expensive drugs pd for by ins. co. than no drugs at all. Research & production ain’t cheap.
TraitorousTrump3
Those aren’t the only two options.
frowardd
i'd rather have publicly funded research
NeoHelios
I’m not saying we have a good system, but at least the drugs are actually being made. It’s a start.
istealthepixelsfromreposts
He increased to price of Daraprim from 13,50 a pill to 750 a pill overnight. Nothing to do with research or production. He is scum.
VinerialBlumpkin11
It is the current drugs that pay for r&d of new ones.
TraitorousTrump3
Thats what they tell you. Meanwhile, people at Amgen get 20+% raises every year.
istealthepixelsfromreposts
Yes, except this drug was bought with the sole intention of hiking up the price and making money, none of it was invested in r&d. Have you
cassaroll
There’s actually lots of steady advancement happening in the medical world. The expected lifespan of cystic fibrosis continues to get longer
Crossark
Well recently we've made progress in something of a vaccine for cancer. Source: https://www.youtube.com/watch?v=PLcm4U2E4yM
PersonalityFire
ourari
Agreed but most advancements are the result of sustained effort by many faceless & undervalued people. Even a Musk stands on their shoulders
ohjohnboy
Exactly. I am in this business and medical science is HEAVILY regulated (for good reason), so it's not really conducive to an individual...
ohjohnboy
Dramatically changing anything. More often it's group of scientists will do that though over many years, headed by someone you will never
ohjohnboy
Hear about
undercookedPancake
Very true. He has the money and gives direction, but it takes a whole lot of people.
ScourgeOf
The fight against the human tendency to mythologize public personalities is hard and thankless.
KyrosXIII
Fuck cystic fibrosis.
buttobviousfacts
...with consent?
KyrosXIII
Buttobviously
MuffinProof
Sideways
MuffinProof
With a rake
GoCatss
Lost my aunt to it 4 years ago. Fuck CF indeed.
doctorbees
In 10 years, I bet CRISPR tech will be able to treat it.
Ragnarstark89
Ten years is a pessimistic view, of everyone screen themselves they could have they gametes fixed, I bet that in 2 years we could be ready
JadawinUK
As usual... being ready and being available and then being affordable for everyone in need are three totally different things.
Ragnarstark89
But crispr is the cheapest and more precise among the gene editing tool, the problem is the modifying a fertilized eggs is still scary...
JadawinUK
Yes, I know. As if one cell or a handful of cells were a real human. Then I have killed trillions already by my own hand. Literally. :)
MyFavouriteHoodie
What is that? My 11yo has it and we have rough times ahead
doctorbees
It's a new gene editing tool. They've been able to effectively cure kids with sickle cell using it, soon more diseases on the horizon :)
TheFlyingSheep
Where did you find that? I’ve only seen data on mice trials
doctorbees
I was just at a conference where the speaker works on it. He showed us his clinical data.
doctorbees
This guy: http://med.stanford.edu/porteuslab.html
Quipman
Two of my cousins have it and they have enormous lunges, "smoke" morning/evening and run/jump like idiots is their way.
Quipman
Had a classmate who had it as well, she was not as active and now at age 27 replaced her lungs. Sweden ftw I guess.
Quipman
Did take maybe like 1-2years to identify what it was for my older cousin and my classmate. So maybe one was unlucky but different results.