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Post by matisse on Feb 19, 2018 19:42:21 GMT -5
I know this is aimed at the guys, but as an autistic person, I would definitely *not* want a cure. It would be like invasion of the bodysnatchers - I just wouldn't be me anymore. It's interesting to hear that many people with purely physical disabilities don't want a cure either. For me it's very much because my disability shapes my personality - to a large sense it *is* my personality. I would happily cure my asthma and hypermobility (I'd miss the flexibility, but not being in chronic pain would be worth it). And especially my allergies - I used to have pet rats, and I'd love to be able to have rats again! And then there's my PTSD. That's a tough one. It's shaped who I am a lot, because I was traumatized as a child, so I have no idea who I'd be without it. But it's caused me so much pain. I guess I'd like to get better, but keep the lessons I've learned. Which is what therapy is supposed to do, right? But it's weird, sometimes I don't want to get better at all. It's just so scary to face how big of a change that would be for me. What did you think of the movie The Accountant? My wife had it on repeat for a while, but once was enough for me.
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Post by matisse on Feb 19, 2018 19:55:38 GMT -5
I’ve never really given it a lot of thought if I’m honest as its just something that can’t happen, however I know for sure 100% I would never have children if I couldn’t be completely guaranteed by the doctors that my child / children wouldn’t be born with the same condition as me. I could never condemn them to the same life of pain and suffering I’ve had to go though both physically and emotionally. We went ahead even without a "complete guarantee." If she happened to be a carrier of my exact condition, our kids would have a chance of having the condition. I think it would be a 75% chance but I don't recall.
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Post by elbs on Feb 20, 2018 8:07:41 GMT -5
I know this is aimed at the guys, but as an autistic person, I would definitely *not* want a cure. It would be like invasion of the bodysnatchers - I just wouldn't be me anymore. It's interesting to hear that many people with purely physical disabilities don't want a cure either. For me it's very much because my disability shapes my personality - to a large sense it *is* my personality. I would happily cure my asthma and hypermobility (I'd miss the flexibility, but not being in chronic pain would be worth it). And especially my allergies - I used to have pet rats, and I'd love to be able to have rats again! And then there's my PTSD. That's a tough one. It's shaped who I am a lot, because I was traumatized as a child, so I have no idea who I'd be without it. But it's caused me so much pain. I guess I'd like to get better, but keep the lessons I've learned. Which is what therapy is supposed to do, right? But it's weird, sometimes I don't want to get better at all. It's just so scary to face how big of a change that would be for me. What did you think of the movie The Accountant? My wife had it on repeat for a while, but once was enough for me. I haven't seen it. What's it about?
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Post by Deleted on Feb 15, 2021 14:12:18 GMT -5
Absolutely. Everything in my life would be easier. Perfect? no, but far easier.
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Post by wheelzoffortune on Aug 5, 2022 17:03:59 GMT -5
I don't think I would. Although my disability was not from birth, it happened when I was 6 months old, so it may just as well have been.
Really the fact of the matter is that I just don't think about it much. For the most part it doesn't really affect what I do.
Every once in a while, I'll be like "hey it would be cool to experience actual dancing or the way "regular" people ride a bike, but those thoughts are few and far between. Maybe once every couple of years or so.
Mostly I just like things the way they are.
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Post by darthoso on Aug 5, 2022 18:26:28 GMT -5
I don't think I would. Although my disability was not from birth, it happened when I was 6 months old, so it may just as well have been. Really the fact of the matter is that I just don't think about it much. For the most part it doesn't really affect what I do. Every once in a while, I'll be like "hey it would be cool to experience actual dancing or the way "regular" people ride a bike, but those thoughts are few and far between. Maybe once every couple of years or so. Mostly I just like things the way they are. People with SMA said that when Spinraza and Evrysdi came out, but eventually almost everyone took it. Granted not a cure but pretty close essentially for SMA babies and slows/stops/reverses progression for adults.
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Post by Dr. BiPAP Sachin on Aug 5, 2022 20:42:09 GMT -5
If there was at least a treatment that helped to lessen vent dependence in DMD, hell yes I'd take it.
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Post by Deleted on Aug 5, 2022 20:53:51 GMT -5
If there was at least a treatment that helped to lessen vent dependence in DMD, hell yes I'd take it. As someone who also has DMD, slowly losing the ability to breathe on your own is honestly the worst part of having this disorder. So fuck yea I'd take it in a heartbeat.
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Post by Braced4Impact on Aug 5, 2022 21:14:22 GMT -5
I think it would depend on a lot of things. I would want to know how it was developed; if others suffered for it, I would not want to benefit from it. I would want to know that it's very safe and doesn't snowball into a lot of other problems down the road.
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Post by darthoso on Aug 5, 2022 22:08:39 GMT -5
I think it would depend on a lot of things. I would want to know how it was developed; if others suffered for it, I would not want to benefit from it. I would want to know that it's very safe and doesn't snowball into a lot of other problems down the road. The FDA is pretty strick about ethical testing so I'm not sure that's an issue to worry about. As for the safety and long term issues, you won't know, rare disease trials are extremely small. COVID vaccines were tested on tens of thousands of people while Zolgensma, a treatment that involves infusing an SMA baby with a liver eating virus to implant the missing SMN1 gene into their motor neurons for life, was tested on maybe 200 kids. An interesting ethical question that's hit the SMA community is should parents give their male SMA kids Evrysdi (daily oral drug) despite the risk of fertility issues as an adult or put them through Spinraza spinal injections every 4 months?
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Post by Nate on Aug 5, 2022 22:12:36 GMT -5
snowballs into a lot of other problems down the road Do you eat meat? Just wondering.
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Post by Braced4Impact on Aug 5, 2022 22:16:30 GMT -5
snowballs into a lot of other problems down the road Do you eat meat? Just wondering. Yep.
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Post by Green on Aug 5, 2022 23:25:51 GMT -5
I think it would depend on a lot of things. I would want to know how it was developed; if others suffered for it, I would not want to benefit from it. I would want to know that it's very safe and doesn't snowball into a lot of other problems down the road.
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Post by MotorcycleCrash on Aug 5, 2022 23:28:06 GMT -5
I wish, completely independent and never get dysreflexia again! I would push my chair off the top of a building, then go get chicken wings and ribs to feed myself for once in many years. It would have to be magic though because my bones have probably degraded into weak sticks.
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Post by outofsight on Aug 7, 2022 6:21:16 GMT -5
If there was a treatment to stop my genetic joint degeneration I would take it, as the pain levels are rising. Ugh.
Josh
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