i think we should be talking about the semi-recent advancements in cystic fibrosis treatment like all the time every day. there hasn’t been a drug like this since AZT medications for HIV infection it is truly fucking miraculous and very important
basically: cystic fibrosis is a genetic disease which makes the mucous a person generates extra sticky. it used to kill people in infancy, then with advancements in medical tech it killed people in young childhood, and until very recently cystic fibrosis patients could expect to live until about thirty years old with consistent painful lung infections and complications.
in 2019 the FDA approved a drug called trikafta (which is really three drugs in one) for cystic fibrosis treatment. what it essentially does is patch up the malfunctioning proteins that cause the extra sticky mucus. trikafta is effective on about 90% of cystic fibrosis patients.
people who had spent their entire lives in and out of hospitals, on and off of ventilators, suffering from pneumonia and sometimes treated through painful procedures like intubation took this drug, got out of bed, coughed up an entire lifetimes worth of mucus out of their lungs over the course of a few hours, breathed clearly for perhaps the first time in their lives, and now go on to live well into their seventies.
like isn’t that insane. isn’t that amazing. doesn’t that give you hope for the future of medical advancements and treatment. fuck. i think about it all the time……
There’s a WHAT.
For WHAT.
It’s been amazing!
My ward is the respiratory ward - CF is one of the things we specialize in.
Since this med came out we haven’t had a SINGLE CF admission to the ward
There used to always be a CF patient spending a couple of months with us at a time
There’s a man who is 23 years old who I was sure would not survive his next admission (aim saturations 85% is end stage lung disease)
There’s a set of the local frequent flyers that we all know so well
Except
No we don’t
On the CF specialist ward (with reasonable staff turnover)
Half the staff have probably never even seen a CF patient
They are going to live
For the people asking “well how do we know people are living that long if it’s so new????” Here’s a page from the CF foundation about life expectancy.
Additionally, it should be noted that metrics like life expectancy are in no way a guarantee of… Anything. There are significant outlier CF patients who are at an advanced age now despite the odds due to a variety of different factors, having lived the majority of their lives before the development of modulators.
But the fact remains that the odds are better now than they have ever ever been before, by leaps and bounds. It isn’t cured, and many patients still need significant treatment in addition to Trikafta, but it is so much better than anyone could have dreamed of twenty years ago, and that is a triumph.
sobbing and crying at the woman who stole a meth addicted kitten from her dealer and then she and the kitten got clean together
ALT
ALT
ALT
thats love baby!!
TUMBLR STORY TIME.
I volunteer for my local shelter and when the weather’s good, we do a free vaccine clinic every Friday. Free distemper, free rabies, cats and dogs. We hand out free food from the pet pantry, we give people leashes and collars, we do whatever we can to keep people’s animals at home and healthy. Every animal that can stay home and be fed and be vaccinated is an animal that we can keep out of the shelter.
We get all kinds of folks, sometimes we even get backyard breeders but we don’t do any judgment, because we want people to come and get their dogs vaccinated, because one parvo case costs $7000+ and the whole year of Parvo vaccines for hundreds of dogs costs less. It’s just harm reduction, everything we do is harm reduction.
So anyway, this one day this woman comes up to the vax clinic and she is high as fuckin’ hell, just obliterated fucked up, smoking a joint in line, and she has this TINY pibble puppy with her, maaaaybe four weeks old. This thing is so fuckin tiny and wormy and lethargic, and she’s like, “Hey I heard I can get her shots.” and we’re like, oh fuck this puppy is gonna die. Like straight up, we were all like, fuck that dog is gonna die. So we gave her wormer, we gave the first distemper shot, and I put together a whole care package: wormer to take home, puppy milk replacer, puppy wet food, a leash, a harness, some blankets, toys, we gave her instructions on how to get the puppy eating food, and we told her to come back in 3 weeks for the follow up vaccine. And we were all like, well fuck, that puppy’s gonna die, goddamnit, that’s so fucked up. But you know, we did our best, and we hoped we’d see her again.
And in three weeks, you guys, she showed up. And she was still high, but like, half-high this time. Smoking a cigartte in line but like, could focus, could ask and answer questions. And she’d taught that tiny puppy how to SIT and had her walking on a leash. We found out that it took her three buses to get to the clinic, and she told us all about how she got the puppy eating right, got her stool solid, she was taking her on walks… The puppy looked so good, you guys. I almost cried, it was so big. Really happy puppy. At the end of the visit, we were like, ok, see you in three more weeks for the next distemper.
So three weeks later, she shows up, and she’s sober, and she told us, “You know, I was really fucked up the day I bought that puppy, I wasn’t sure I was going to live, and I bought that puppy and she was too young, and I didn’t know what I was doing but y'all were so nice to me, and you helped me so much, and I knew that I had to give this puppy the best life I could, so I moved back in with my grandma, and I’m getting clean, and I’m on methadone, and I’m going to rehab next week, and when I get back, I’ll come back and visit you guys again.”
So I just wanna say. Sometimes it’s hard to find a reason to get clean for yourself. Sometimes you gotta do it for a little critter that depends on you.
I haven’t seen a lot of talk about this, and I know we’re all emotionally/mentally exhausted in the USA with rights being stripped, but I think this is important. She’s a brave fucking woman, who is no longer allowed to speak for the people she represents.
Much like the Pearson and Jones expulsion, this is a flagrant move against democracy. However unlike P&J, she wasn’t expelled, just not allowed into the House meetings and not able to speak. She can vote, at least, but…that’s not much in a republican majority.
I’ll add some here even though it’s kind of an old issue. She was advocating not to pass a bill because it would hurt trans youth and delivered such a gut wrenching one liner.
“I hope the next time there’s an invocation, when you bow your heads in prayer, you see the blood on your hands.”
Allegedly that was the specific line that led to her being censured but if the bill wasn’t being discussed she wouldn’t have hit them where it hurts.
There were multiple protests in favor of Zooey along with people chanting “Let her speak” in the legislature so loudly they postponed a meeting. While everyone else was leaving she simply lifted her mic in solidarity as the chanting continued.
Not to dox myself, but I’m from this state, and her story, despite what happened, was so inspiring. I cried reading about her. I could not believe someone could get into a government position there and fight so hard for someone like me while being so open about themselves.
I’m surprised this video hasn’t gotten more attention but I’ll drop this here
But seriously this does paint a good picture of what it was like growing up there
Some supporters but the ones against you make themselves known
Yet despite that, she still fought. And people stuck with her. It made me feel as though things there weren’t as hopeless.
You are not safe from this. You, the person reading this, are not safe from this. No matter how educated or open minded you think you are, you are not safe from this. The moment you think you are safe from it is the moment you become the most susceptible.
Its similar to why you cannot put bad people in a class of their own. The moment you do that you stop being able to see the bad things that the people closest to you do a la “my best friend couldn’t have said that racist thing, they’re not evil.”
The moment you think you are immune from this type of backslide into right wing nonsense is the moment you stop questioning yourself enough to keep yourself from backsliding into right wing nonsense a la “I mean im not antiscience, im vaccinated, I just think that fluoride in our water supply is imparting children’s ability to learn as fast as they otherwise could without it.”
Remember, being progressive means progressing, its about always moving forward. The moment you rest on your laurels and stop putting in effort to keep the progression is the moment you start becoming left behind.
real tired of hearing the vegan vs. omnivore arguments when the real superior diet in terms of both cruelty and ecosystem is locally sourced
beef and pork from a farm 10 minutes away from you is more ethical and less detrimental to the environment than quinoa grown in ecuador. the future is food forests. the green revolution is food forests. if we manage to survive this apocalyptic hellscape all of your food, plant and animal, is going to come from within half an hour of where you live. plant a vegetable garden in the meantime
As a trained conservation biologist this is the most important step we can take. You do not understand how many issues we could solve if people bought most of their food from local sources.
a while ago I read this sci-fi short story from the 50s where a guy is kidnapped and interrogated by aliens using a very sophisticated lie detector, but he realizes that the lie detector works off technical truth, and with some careful phrasing and misdirection, he manages to make them believe that humans are a race of immortal, overpowered, omniscient telepathic beings. and it works.
my favorite part is when he tells them that humans are “capable of transportation without the aid of spaceships or any vehicles, just by using mental power to control physical matter”. it’s true, we can. it’s called walking.
okay I found it, it’s The Best Policy by Randall Garrett
and it has other gems such as “I know beyond a shadow of a doubt what every member of my race thinks of you” (they don’t know you exist) and “every human knows exactly as much about the location of your home planet as I do” (nothing)
ALT
ALT
ALT
