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Major cause of inflammatory bowel disease discovered

crick.ac.uk

11–19 of 19 posts

Re: Major cause of inflammatory bowel disease discovered

#11

Gene therapy is opening miraculous doors in medicine. One more generation and I expect many of today's diseases will be entirely treatable, with some eliminated (provided they don't get caught up in politics).

As much as I want to see gene therapy succeed, I think one generation is awfully aspirational. I figured it was a generation away in the late 1990s- then a single person died in a single gene therapy trial and basically the field languished for over a decade.

Gene therapy seems most suited to diseases caused by single-gene mutations where repairing the mutation cures the disease. I think also it will be almost entirely somatic, not germline modification, for societal acceptance. I expect it to continue to be extremely expensive and high-touch.

Re: Major cause of inflammatory bowel disease discovered

#12
post #7

Earlier quoted context omitted.

And provided the specific gene therapy doesn't cause side-effects we don't yet understand. I'd like extensive trials on this before I let it anywhere near my own body, even if I could greatly benefit from a solution to IBD.

I'm at the "sign me up, worst case im officially disabled or dead" stage of Crohn's+celiac. Not recognized as a disability by society (for aid/legal), not bad enough just to cut out the problem chunks of colon, but i still can't live a productive life. I'm so tired of struggling to keep the career that funds my treatment. Work is all I barely have the energy for and the rest of the time is sleeping or cooking. Somebo…

I hope you see better days

Re: Major cause of inflammatory bowel disease discovered

#13
post #7

Earlier quoted context omitted.

And provided the specific gene therapy doesn't cause side-effects we don't yet understand. I'd like extensive trials on this before I let it anywhere near my own body, even if I could greatly benefit from a solution to IBD.

I'm at the "sign me up, worst case im officially disabled or dead" stage of Crohn's+celiac. Not recognized as a disability by society (for aid/legal), not bad enough just to cut out the problem chunks of colon, but i still can't live a productive life. I'm so tired of struggling to keep the career that funds my treatment. Work is all I barely have the energy for and the rest of the time is sleeping or cooking. Somebo…

There's many other "worst case" scenarios than that. One is you'll end up worse but still not officially disabled. I've been there. But I do understand wanting to take the risk. I've had IBD all my life in addition to intermittent debilitating migraines and very bad allergies, and I've been part of various trials and (completely above board) experiments with new drugs and treatments, yet in every single case it ended up causing other side-effects or problems that just added to my list of issues. Eventually I've reached the conclusion that there rarely is any "miracle cure", because the body is a complex system -- and we can't track all the individual interactions well enough yet. I've instead managed to improve my situation a lot by changing habits and diets and behaviours. I insist on working from home because that's the only way I can manage it, and I also take long walks to make my bovel "active". To name the simplest of things. Which might sound trivial but it really hasn't been.

Re: Major cause of inflammatory bowel disease discovered

#14

Gene therapy is opening miraculous doors in medicine. One more generation and I expect many of today's diseases will be entirely treatable, with some eliminated (provided they don't get caught up in politics).

Reminds me of the Youtube Guy who homebrewed a gene-therapy to treat his Lactose Intolerance, successfully

https://www.youtube.com/watch?v=aoczYXJeMY4

Re: Major cause of inflammatory bowel disease discovered

#15
post #14

Gene therapy is opening miraculous doors in medicine. One more generation and I expect many of today's diseases will be entirely treatable, with some eliminated (provided they don't get caught up in politics).

Reminds me of the Youtube Guy who homebrewed a gene-therapy to treat his Lactose Intolerance, successfully https://www.youtube.com/watch?v=aoczYXJeMY4

"successfully"

God only knows if he's introduced a carcinogenic gene mutation, or if the effects will last. This is the exact thing proper studies examine.

Re: Major cause of inflammatory bowel disease discovered

#16
post #7

Earlier quoted context omitted.

And provided the specific gene therapy doesn't cause side-effects we don't yet understand. I'd like extensive trials on this before I let it anywhere near my own body, even if I could greatly benefit from a solution to IBD.

I'm at the "sign me up, worst case im officially disabled or dead" stage of Crohn's+celiac. Not recognized as a disability by society (for aid/legal), not bad enough just to cut out the problem chunks of colon, but i still can't live a productive life. I'm so tired of struggling to keep the career that funds my treatment. Work is all I barely have the energy for and the rest of the time is sleeping or cooking. Somebo…

I'm somewhere in between... I mean, I have a really hard problem with digestion in general at this point, and similar issues with chronic exhaustion. I've had so many bad/negative reactions to so many medications, I'm more than fearful of gene manipulation.

Re: Major cause of inflammatory bowel disease discovered

#17
post #15
post #14

Earlier quoted context omitted.

Reminds me of the Youtube Guy who homebrewed a gene-therapy to treat his Lactose Intolerance, successfully https://www.youtube.com/watch?v=aoczYXJeMY4

"successfully" God only knows if he's introduced a carcinogenic gene mutation, or if the effects will last. This is the exact thing proper studies examine.

If he prefers to live his best years lactose tolerant and die earlier but having lived the way he wanted as opposed to living a mediocre lactose intolerant life for longer, then it could still be a success

Re: Major cause of inflammatory bowel disease discovered

#18
post #7

Earlier quoted context omitted.

I'm at the "sign me up, worst case im officially disabled or dead" stage of Crohn's+celiac. Not recognized as a disability by society (for aid/legal), not bad enough just to cut out the problem chunks of colon, but i still can't live a productive life. I'm so tired of struggling to keep the career that funds my treatment. Work is all I barely have the energy for and the rest of the time is sleeping or cooking. Somebo…

There's many other "worst case" scenarios than that. One is you'll end up worse but still not officially disabled. I've been there. But I do understand wanting to take the risk. I've had IBD all my life in addition to intermittent debilitating migraines and very bad allergies, and I've been part of various trials and (completely above board) experiments with new drugs and treatments, yet in every single case it ended…

No, then a company running tests is liable for damages. Being a test subject isn't a free lunch, but would definitely change my situation no matter how it played out.

I've found "working from home to mitigate issues" to just be too socially isolating to stay productive. Needless to say a career change is something i am exploring, but the effective addiction to health insurance to enable access to Biologic Medications makes that, complicated.

Re: Major cause of inflammatory bowel disease discovered

#19
post #15
post #14

Earlier quoted context omitted.

Reminds me of the Youtube Guy who homebrewed a gene-therapy to treat his Lactose Intolerance, successfully https://www.youtube.com/watch?v=aoczYXJeMY4

"successfully" God only knows if he's introduced a carcinogenic gene mutation, or if the effects will last. This is the exact thing proper studies examine.

Effects wore off after 18 months I think. He explains in the video why it was expected.

He took the pills 6 years ago still not killed by cancer. And of course this is n=1. The first thing he says after taking the pills is "Lets hope this does not kill me" :D

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