Major cause of inflammatory bowel disease discovered

dekhn 2 years ago | |

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.

simianparrot 2 years ago | |

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.

Rhapso 2 years ago | | |

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.

Somebody at some point has to be a test subject.

stevenicr 2 years ago | | |

I've been seeing many people who have issues that make it impossible for them to handle most 9-5 work.. I feel there is great need, but also socieyt could seriously benefit from some programs that help people with like 1/2 disablity payments and job protections and trainings and easier access to life coaches to navigate ways to be productive at the times and abilities -

I don't know what to call it, but I see many people who do want to work and just have issues that make it impossible for them to fit into most roles 40 hours a week after week without issues and the safety nets would rather you fall all the to the floor before any help emerges, rather than trying to anticipate a gap and making it easier to bounce back sooner or only fall partial or something.

I've seen several struggle with similar digestion problems and it's hard day to day, week to week, even when you try to plan and adapt food purchases and such.

simianparrot 2 years ago | | |

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.

Rhapso 2 years ago | | |

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.

tracker1 2 years ago | | |

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.

thebruce87m 2 years ago | | |

I hope you see better days

julius 2 years ago | |

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

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

ashleyn 2 years ago | | |

"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.

culopatin 2 years ago | | |

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

julius 2 years ago | | |

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

c048 2 years ago | |

... and possibly a lot of illnesses related to extreme aging, not seen today, might appear.

yourapostasy 2 years ago | | |

That is, shall we say, a champagne problem (a problem we want to experience). Mass life extension potentially unlocks compounding effects that can lead to some bootstrapping outcomes. Expertise can be deployed deeper and/or broader across more adjacent fields for ever increasing cross fertilization.