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Cystic fibrosis breakthrough has given patients a chance to live longer

theatlantic.com

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Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#11

Post by gfodor »

forgetfreeman wrote: post #3

I had a coworker with CF that started this treatment. Over the course of their first year of treatment, as it became plain to them just how effective it was and what the implications for their long-term survival might be, their behavior changed drastically. Within 18 months of starting treatment they were showing worrying indications of both budding mental health issues and heavy substance abuse. Their marriage, whic…

I have CF, and my whole life I avoided things like CF communities explicitly because I felt these ties to the disease would lead to a crisis in my life if it was ever something I could stop centering my life around.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#12

Post by therein »

bdcravens wrote: post #4

I have CF, and I take Trikafta. Before Trikafta, I usually had a 5+ day stay in the hospital every year, and sometimes I have would very stubborn respiratory infections that just wouldn't go away. I was mentally preparing myself for inevitable decline and eventual death. Trikafta changed my situation dramatically. I've had no hospitalizations, and most the classic CF symptoms are either gone or extremely diminished.…

One of the first friends I made in college was a friend with CF. I didn't know what CF was. He was very mature for our age and generally a very nice, happy, caring person. Got internships, studied with us. Went to bars with us but never drank because he couldn't. He had stories about how Make-a-Wish foundation has been dragging their feet not to give him his wish since his childhood.

He would take his enzymes, do the vibrating jacket treatment. He graduated and got a full time offer from a nice company. As he was relocating, he picked up some infection and passed away in a few weeks. None of us expected it. This was months before I heard of the approval of Trikafta.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#13

Post by therein »

COGlory wrote: post #6
bdcravens wrote: post #4

I have CF, and I take Trikafta. Before Trikafta, I usually had a 5+ day stay in the hospital every year, and sometimes I have would very stubborn respiratory infections that just wouldn't go away. I was mentally preparing myself for inevitable decline and eventual death. Trikafta changed my situation dramatically. I've had no hospitalizations, and most the classic CF symptoms are either gone or extremely diminished.…

Sorry for the potentially insensitive question, but I really am wondering about this: >One side effect I should mention: many report extreme anxiety. However, I was starting an anxiety medication for the first time (something I should have done 20 years ago, but alas ...) and so those effects were muted or hidden to me. I would have imagined that most people with CF already had extreme anxiety - wondering when the in…

Just an anecdotal experience so doesn't necessarily mean anything but the only person I knew that had CF had absolutely no anxiety from his condition.

If anything he was a very mature guy for his age, having realized he has limited time but of course I wouldn't know the internal struggles he might have kept from us.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#14

Post by Aurornis »

gfodor wrote: post #11
forgetfreeman wrote: post #3

I had a coworker with CF that started this treatment. Over the course of their first year of treatment, as it became plain to them just how effective it was and what the implications for their long-term survival might be, their behavior changed drastically. Within 18 months of starting treatment they were showing worrying indications of both budding mental health issues and heavy substance abuse. Their marriage, whic…

I have CF, and my whole life I avoided things like CF communities explicitly because I felt these ties to the disease would lead to a crisis in my life if it was ever something I could stop centering my life around.

Chronic illness forums are almost universally terrible. I try to navigate the online communities for a family member’s disease to keep up with new developments. A decade ago I found some value in the way they presented news and research and anecdotes.

Now, the forums are overrun by small numbers of constantly online members who feel the need to dominate every conversation. The content has become almost entirely venting and memes, with an unreasonable amount of alternative medicine being pushed as fact. It’s understandable that they’re frustrated, to say the least, but the way their frustration gives way to a communal rage against doctors has weirdly opened doors to alternative medicine peddlers. It’s disgusting to me to see how the alternative medicine pushers have arrived with open arms and comforting smiles for vulnerable communities, which slowly becomes a sales pitch for their products.

I’ve seen everting from people peddling custom diet consulting based on your 23andMe results to invitations to private, paid Telegram channels where they supposedly share their secret cures, to doctors from Eastern Europe who claim to have cured the condition (which has eluded many researchers and pharmaceutical companies) with a custom treatment made from the patients’ own urine. The way these communities set themselves up to rage together at modern medicine opens the door for friendly alternative medicine scams.

It’s depressing.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#15

Post by therein »

bdcravens wrote: post #5

Interesting note about Trikafta and other advancements in cystic fibrosis: the Make a Wish Foundation announced that children with CF now no longer automatically qualify for their program due to the advancements in care. https://wish.org/cf-update

My friend that had CF was eligible. He was asked by the foundation what he wanted when he was 5-6 years old. He said he wanted to go Zorbing in Australia.

They dragged it until he was 18. He always jokingly said "make a wish foundation is waiting, hoping I'll die".

He finally got to go Zorbing when he was 19. Passed away a few years later.

Not surprised the foundation jumped on Trikafta to remove eligibility.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#17

Post by mason55 »

COGlory wrote: post #6
bdcravens wrote: post #4

I have CF, and I take Trikafta. Before Trikafta, I usually had a 5+ day stay in the hospital every year, and sometimes I have would very stubborn respiratory infections that just wouldn't go away. I was mentally preparing myself for inevitable decline and eventual death. Trikafta changed my situation dramatically. I've had no hospitalizations, and most the classic CF symptoms are either gone or extremely diminished.…

Sorry for the potentially insensitive question, but I really am wondering about this: >One side effect I should mention: many report extreme anxiety. However, I was starting an anxiety medication for the first time (something I should have done 20 years ago, but alas ...) and so those effects were muted or hidden to me. I would have imagined that most people with CF already had extreme anxiety - wondering when the in…

> I would have imagined that most people with CF already had extreme anxiety - wondering when the infection that is going to end one's life will arrive. Is it really possible that Trikafta is causing noticeably worse anxiety?

There's a discussion of this in the article. Essentially, a bunch of people have said that they started experiencing extreme anxiety when they started Trikafta, and that stopping or lowering the dose helped immensely. However, clinicians have said that there's no actual evidence that the Trikafta is causal.

So it seems to be a bit of an open question and I'm sure an emotional one on both sides.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#18

Post by spondylosaurus »

Aurornis wrote: post #14
gfodor wrote: post #11

Earlier quoted context omitted.

I have CF, and my whole life I avoided things like CF communities explicitly because I felt these ties to the disease would lead to a crisis in my life if it was ever something I could stop centering my life around.

Chronic illness forums are almost universally terrible. I try to navigate the online communities for a family member’s disease to keep up with new developments. A decade ago I found some value in the way they presented news and research and anecdotes. Now, the forums are overrun by small numbers of constantly online members who feel the need to dominate every conversation. The content has become almost entirely venti…

IME one reason (out of many) why chronic illness forums tend to be terrible is that people who are managing their conditions reasonably well don't participate much. Which makes sense—the better you're doing, the less time you spend thinking about it and the less time you're inclined to spend discussing it—but that creates an environment where the most miserable voices become the loudest.

And so (1) there's often a disproportionate focus on doom and gloom rather than success stories, which paints a pessimistic picture for anyone joining after a recent diagnosis, and (2) the most prominent voices have a wounded-cornered-animal mentality that makes them defensive and/or prone to lashing out. And I can't totally blame them, given how hard it is to live with a treatment-resistant chronic condition, but it's not the most constructive environment for everyone else.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#20

Post by josefrichter »

Around the time Trikafta became widely available I used to work for a clinical trials company. I remember one guy with CF telling us the full story of his life, how plenty of his friends with CF died in their 20s, and how, after taking the new meds, he felt effects within the first hour. It was like a miracle. If I remember correctly, there’s still some 10% of CF patients for whom it doesn’t work but I hope we will soon eradicate this horrendous disease altogether.
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