[simianparrot]

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]

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]

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]

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]

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]

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]

I hope you see better days