3 ms·

Data about me and what I click is one issue. Data that can be used against my children is another. My late wife had MS. It took her. Insurance companies would

by markx2 1y ago

Data about me and what I click is one issue. Data that can be used against my children is another. My late wife had MS. It took her. Insurance companies would love that data to load against anything my kids do. There are other issues but the fact is that companies will use DNA and every other data point they can to maximise what they take and minimise with loaded terms what they might, just might, maybe, pay out. It's not about the now. It's about the later.

johnisgood 1y ago
Oh man, I have MS and I have immobility and incontinence issues at 30. Based on the location of lesions, I have a high risk for four-limb paralysis. It scares the hell out of me, and my quality of life is out the window already anyways. Life was hard before, it is much harder now.
- nylonstrung 1y ago
  That would be very tough to deal with. I hope you're doing okay
  - johnisgood 1y ago
    It really is. I can barely walk, the longest distance I can do is less than 100 meters at this point, because my legs are weak, and the muscles are rigid, and there is some severe tremor going on which makes it even more difficult to walk. Sadly this is coupled with incontinence (mainly urinary), so before I go out (every 3 months to the doctor), I have to make sure I do not drink, or if I do drink, I need to account for that when I go outside, but as a precaution I wear those diapers, not sure how they are called, those undies that are diapers, essentially. I wet my bed many times at night. I have severe anxiety and depression which I have had long before the lesions, but given my circumstances and the damage, it is now worse. I wish I had more financial help. There is a friend who helps me as much as he can, but other than that, I got no one. The Government gives me almost nothing per month. According to their calculations, somehow a person is supposed to get by by 900 HUF (~2.6 USD) per day.
    - johnisgood 1y ago
      I honestly do not know what to do about my financial issues. I do not think raising GoFundMe would go anywere, even though all it really takes is finding 100 people who would not mind donating 10 USD. 1000 USD would be a lot to me. I do not know how to make it viral. I do not want to appeal to people's emotions but it seems like I would have to do that. I want to keep my anonimity too, but that makes it even less likely for people to donate, so I really have no idea what I should do.
    - nylonstrung 1y ago
      If you set up a GoFundMe or something I'll send some I'd probably suggest you post about your experience with this in a way to relates to your experience as a dev since it seems you write about technical stuff? I'm thinking about that blind guy recently talking about Linux accessibility making blindness a lot more relatable to people on sites like HN, who also are more likely to have disposable income to donate
eddiewithzato 1y ago
Insurance companies cannot use it. And if insurance companies in the future would be allowed to use it, they would require you to get DNA samples for your policy. So it’s pointless in the end
- ikekkdcjkfke 1y ago
  They don't use It, but they might use an aggregate of it it. Like google doesn't sell data, but it leaks it freely in the ad bidding process, it's technicalities all the way in this business i feel like. Also, it's not about fascist regimes or not being a criminal, it's about databases getting hacked and ending up in the hands of scammers

by markx2 1y ago

johnisgood 1y ago

Oh man, I have MS and I have immobility and incontinence issues at 30. Based on the location of lesions, I have a high risk for four-limb paralysis. It scares the hell out of me, and my quality of life is out the window already anyways. Life was hard before, it is much harder now.

nylonstrung 1y ago
That would be very tough to deal with. I hope you're doing okay
- johnisgood 1y ago
  It really is. I can barely walk, the longest distance I can do is less than 100 meters at this point, because my legs are weak, and the muscles are rigid, and there is some severe tremor going on which makes it even more difficult to walk. Sadly this is coupled with incontinence (mainly urinary), so before I go out (every 3 months to the doctor), I have to make sure I do not drink, or if I do drink, I need to account for that when I go outside, but as a precaution I wear those diapers, not sure how they are called, those undies that are diapers, essentially. I wet my bed many times at night. I have severe anxiety and depression which I have had long before the lesions, but given my circumstances and the damage, it is now worse. I wish I had more financial help. There is a friend who helps me as much as he can, but other than that, I got no one. The Government gives me almost nothing per month. According to their calculations, somehow a person is supposed to get by by 900 HUF (~2.6 USD) per day.
  - johnisgood 1y ago
    I honestly do not know what to do about my financial issues. I do not think raising GoFundMe would go anywere, even though all it really takes is finding 100 people who would not mind donating 10 USD. 1000 USD would be a lot to me. I do not know how to make it viral. I do not want to appeal to people's emotions but it seems like I would have to do that. I want to keep my anonimity too, but that makes it even less likely for people to donate, so I really have no idea what I should do.
  - nylonstrung 1y ago
    If you set up a GoFundMe or something I'll send some I'd probably suggest you post about your experience with this in a way to relates to your experience as a dev since it seems you write about technical stuff? I'm thinking about that blind guy recently talking about Linux accessibility making blindness a lot more relatable to people on sites like HN, who also are more likely to have disposable income to donate

eddiewithzato 1y ago

Insurance companies cannot use it. And if insurance companies in the future would be allowed to use it, they would require you to get DNA samples for your policy. So it’s pointless in the end

ikekkdcjkfke 1y ago
They don't use It, but they might use an aggregate of it it. Like google doesn't sell data, but it leaks it freely in the ad bidding process, it's technicalities all the way in this business i feel like. Also, it's not about fascist regimes or not being a criminal, it's about databases getting hacked and ending up in the hands of scammers