disabled

73 ms·

601.
by disabled 7y ago
> But not the same rare disease. Obviously. Clearly you do not understand what it means to have a rare disease and that rare diseases play by a totally different set of rules than common health conditions. > AI can be order or orders
602.
by disabled 7y ago
Did you read the second comment on that link from Spooky23? It is legal. Also the second linked article ascribes to the practice being legal. It was a Propublica report.: "Yes, you are. The events surrounding what happened to my wife w
603.
by disabled 7y ago
This is naive. Read spooky23's posts and the links posted by him. It is a horror story and a huge violation of their privacy: https://news.ycombinator.com/item?id=20183968 You can find more details about the situation
604.
by disabled 7y ago
HIPAA anonymized data sets can be combined with any other data set(s) to reidentify the individual, and it is 100% legal to do so. In fact, data brokers (there are 4,000-8,000 of them in the US) will sell lists of people with, for example,
605.
by disabled 7y ago
Dude, it is not a "contribution", it is a black-box partnership. I will give up my data for "research" as long as I am 100% certain that my medical information will not be abused in a way that can harm me or others. Unti
606.
by disabled 7y ago
They have no idea. Even data from continuous glucose monitors (most commonly used in type 1 diabetes) are directly shared with insurance companies, where certain patients with diabetes are "flagged" as "problem patients"
607.
by disabled 7y ago
I "love" how Google just throws in "rare diseases" in to this, via their press release, as somebody who lives with 2 rare diseases that affect my peripheral nervous system. Actually, one of the diseases I have was discov
608.
by disabled 7y ago
Apparently wage garnishment is allowed under Virginia law, as it is a "state institution" (the hospital system). That is what makes this story in particular unique. I anticipate something like this happening (or worse) in my state
609.
by disabled 7y ago
You're welcome! I'm in Houston. The link to apply for a card: https://houstonlibrary.org/my-link-library-card-registration
610.
by disabled 7y ago
Oh yeah, I totally forgot: You may be surprised by the newly released Amazon Polly Neural Text to Speech voices. I use them sometimes, too, now: https://aws.amazon.com/polly/
611.
by disabled 7y ago
Sorry for the late reply. Voice synthesis takes getting used to, and it is much easier to deal with if you have to rely on it for a print-related disability. The voices on Voice Dream Reader, such as Sharon or Heather, are excellent compare
612.
by disabled 7y ago
Agreed 100%. Reading is far less daunting on a screen for me. Initially it may take getting used to. I also designate certain electronic devices for "immersive reading"/working only, and therefore I do not mess around or get
613.
by disabled 7y ago
Sorry for the late reply and sorry for this being long. I hope that you see this message. This sounds just like a visual perceptual disability (visual motor deficit), such as convergence insufficiency (which I have), which 13% of children h
614.
by disabled 7y ago
Reading more than 3-4 paragraphs in more than one stretch is usually too hard for me. When I was a kid (plus in university), I just thought I was lazy (also I did not think my eyes had a problem, either). Anyways, I have to get my eyes chec
615.
by disabled 7y ago
This is one of the reasons I use a screen reader, but I have a print-related disability. I gave details about my setup on this thread.
616.
by disabled 7y ago
This is slightly off topic but some people may find this setup interesting. I have a print-related disability, so I use screen readers to speak printed material to me. I actually prefer synthesized speech over human narrated audio. The scre
617.
by disabled 7y ago
Also, some people who are wheelchair users, who require an accessible wheelchair stall, experience severe autonomic dysreflexia if they are unable to empty their bladder and/or bowels right away! Trust me, it is just about the worst fe
618.
by disabled 7y ago
This is coming from a disabled individual: I do not find the practice described in the post offensive, as a disabled person, but many people in the disability community actually do find it offensive. I am talking about "simulating&quot
619.
by disabled 7y ago
I would agree with this article, as an electrical engineering student. All solutions to problems have design constraints, and all solutions are limited. All actions have consequences. The "move fast and break things" mentality is
620.
by disabled 7y ago
Thank you so much! Same to you, my friend! :-)
621.
by disabled 7y ago
Sure. Since I cannot PM you, I will use a more private address: secretsquirrel89@protonmail.com
622.
by disabled 7y ago
Thank you. It's OK. I have lived a good life with T1D and it's been the only life I've really known (diagnosed at age 5). There are people who do well with it, long term. I just am just trying to roll with all of this and not
623.
by disabled 7y ago
No. My body produces virtually no insulin. A C-Peptide test was performed in the past 10 years, when I was receiving immunomodulatory treatment, and showed no traceable C-Peptide in my body. Hence, my body is either producing none to extrem
624.
by disabled 7y ago
Wow. I actually have a lot in common with this dude. I have a very rare disease that causes autoimmune autonomic failure, which was initially blamed as "diabetes complications", due to type 1 diabetes. I was always suspicious it w
625.
by disabled 7y ago
You definitely nailed it on the head. You are awesome! :) Thank you for being gracious, understanding and thoughtful about these issues. Also, thank you very much for the well wishes! I really appreciate it. As for more open-ended stuff, li
626.
by disabled 7y ago
Thank you for covering this issue properly. I cannot thank you enough. As a disabled individual, I appreciate you telling it for what it actually is here. That can be hard to do.
627.
by disabled 7y ago
Agreed. Same here.
628.
by disabled 7y ago
I definitely agree with you. Thank you for taking a look at this objectively. I really do appreciate it. A lot of this stuff is frustrating to me. I live with 2 rare autoimmune neurological diseases, with one of them being very rare, which
629.
by disabled 7y ago
You're welcome. I appreciate it.
630.
by disabled 7y ago
The way this news is portrayed, as "heartwarming", does nobody favors. The autonomic dysreflexia, which people with tetraplegia are almost guaranteed to have, is literally one of the worst feelings in the world. I promise you, and

More ›