4 ms·

As a Type I diabetic for — what is it now — 21 years, stories like this make my heart race. I simultaneously admire the author's fortitude and am hit by powerf

by kamens 11y ago

As a Type I diabetic for — what is it now — 21 years, stories like this make my heart race. I simultaneously admire the author's fortitude and am hit by powerful worry and frustration that facing the non-stop challenges of T1D for so many years can result in such outcomes — and often as a result of one's own imperfections facing those challenges. The guilt the author describes when realizing she'd go blind had to be unbearable. Man I hope to work hard enough and be lucky enough to not face that.

acron0 11y ago
T1D here too, echoing your sentiments. It's a terrifying reality to face. Perhaps foolish to say but I think I'd rather lose all of my limbs (another fun possibility for diabetics) before I lose my vision. Huge respect to the author.
- kamens 11y ago
  Ditto your props to author.
- parennoob 11y ago
  As an aside, apart from the obvious "Keep a close watch on your glucose levels, take your insulin regularly, and do a glycosylated hemoglobin test every year or two" – are there any other things that diabetics can do to proactively ward off the chances of these happening?
  - GunlogAlm 11y ago
    Always attend scheduled eye exams -- all Type 1 diabetics (in the UK, where I am) are given diabetic retinopathy screenings annually, regardless of when they were diagnosed (it's rare for retinopathy to occur in those who've been diagnosed for under 5 years). They're really important, as retinopathy caught in its early stages is much easier to treat and treatment is usually more effective. There's some evidence excessive alcohol consumption is associated with higher-than-normal incidences of diabetic retinopathy, though I've read studies that say there's no effect if alcohol consumption is moderate. Some studies say cannabis has a preventive effect.
  - ars 11y ago
    > Keep a close watch on your glucose levels I can't vouch for either of these either way (i.e. do your own research): But I've heard of people keeping an even closer watch than typical. Continuous monitoring and pump to try to keep the glucose levels very even - the way they are for a non-diabetic. Also some people try to keep glucose levels somewhat lower than recommended under the assumption that the spikes cause harm, so starting with a lower baseline is better. (Of course don't overdo it.)
  - newscracker 11y ago
    You could try a low fat whole foods plant based diet to lower your risks. There has been research done for Type 2 Diabetes where this has helped reverse the disorder, and it helps in Type 1 too (although there's no cure for Type 1). See http://www.pcrm.org/sites/default/files/pdfs/health/Type-1-diabetes-fact-sheet.pdf http://www.pcrm.org/sites/default/files/pdfs/health/Type-1-d... Even if you don't believe this, just give it a try for a month along with your regular monitoring and insulin intake.
    - kpil 11y ago
      Uhm, there is also some studies on high-protein, low-carbohydrates diets, that is also giving good results for glycaemic control for type-1 diabetics. And a lot of angry arguments and shouting too from people with various levels of expertise. I know almost nothing on the topic, but my guess is that the key is to have a stable and low intake of slow carbohydrates, avoid fast carbohydrates, but most importantly - you should actually like the food so that you can stick to the diet.
- noir_lord 11y ago
  As someone with a medical condition that may result in severe if not total paralysis at some point (the damage is already pretty bad and it could get a whole lot worse) I agree. I pretty much have accepted that even if I do all the sensible things I might still end up in a wheelchair but the thought of losing my sight is still far more terrifying.
infofarmer 11y ago
Not diabetic here, but with progressing myopic retinopathy of unclear aetiology. There is mostly random common sense advice on how to prolong one's retina usefulness, which different doctors mention different pieces of, but the unfortunate and exasperating part is the surprising lack of research. E.g. we still don't know what makes our eyeballs grow or stop, and there's been about two or three original attempts at investigating it (only one with humans last I checked). On the other hand, we do have ample research that disproves or undermines most of the common sense advice (e.g. eye rest every hour, eye exercise, keeping fit, etc). Conflicting schools of traditional medicine do not help as well: you could get the opposite opinion on laser treatment (for retina) and scleroplasty depending on whether the specialist is from the US or Europe. My hope is platforms like HealthKit will enable massive new research into this. Alternatively, cyber-eyes.
- gleb 11y ago
  Is scleroplasty still practiced outside of Eastern Europe?
- jarfil 11y ago
  I was hoping for cyber-eyes long before I learned I might go blind. UV, IR filters, micro and tele, virtual display, recording... Now I'm hoping for cyber-eyes before I go blind.

by kamens 11y ago

acron0 11y ago

T1D here too, echoing your sentiments. It's a terrifying reality to face. Perhaps foolish to say but I think I'd rather lose all of my limbs (another fun possibility for diabetics) before I lose my vision. Huge respect to the author.

kamens 11y ago
Ditto your props to author.
parennoob 11y ago
As an aside, apart from the obvious "Keep a close watch on your glucose levels, take your insulin regularly, and do a glycosylated hemoglobin test every year or two" – are there any other things that diabetics can do to proactively ward off the chances of these happening?
- GunlogAlm 11y ago
  Always attend scheduled eye exams -- all Type 1 diabetics (in the UK, where I am) are given diabetic retinopathy screenings annually, regardless of when they were diagnosed (it's rare for retinopathy to occur in those who've been diagnosed for under 5 years). They're really important, as retinopathy caught in its early stages is much easier to treat and treatment is usually more effective. There's some evidence excessive alcohol consumption is associated with higher-than-normal incidences of diabetic retinopathy, though I've read studies that say there's no effect if alcohol consumption is moderate. Some studies say cannabis has a preventive effect.
- ars 11y ago
  > Keep a close watch on your glucose levels I can't vouch for either of these either way (i.e. do your own research): But I've heard of people keeping an even closer watch than typical. Continuous monitoring and pump to try to keep the glucose levels very even - the way they are for a non-diabetic. Also some people try to keep glucose levels somewhat lower than recommended under the assumption that the spikes cause harm, so starting with a lower baseline is better. (Of course don't overdo it.)
- newscracker 11y ago
  You could try a low fat whole foods plant based diet to lower your risks. There has been research done for Type 2 Diabetes where this has helped reverse the disorder, and it helps in Type 1 too (although there's no cure for Type 1). See http://www.pcrm.org/sites/default/files/pdfs/health/Type-1-diabetes-fact-sheet.pdf http://www.pcrm.org/sites/default/files/pdfs/health/Type-1-d... Even if you don't believe this, just give it a try for a month along with your regular monitoring and insulin intake.
  - kpil 11y ago
    Uhm, there is also some studies on high-protein, low-carbohydrates diets, that is also giving good results for glycaemic control for type-1 diabetics. And a lot of angry arguments and shouting too from people with various levels of expertise. I know almost nothing on the topic, but my guess is that the key is to have a stable and low intake of slow carbohydrates, avoid fast carbohydrates, but most importantly - you should actually like the food so that you can stick to the diet.
noir_lord 11y ago
As someone with a medical condition that may result in severe if not total paralysis at some point (the damage is already pretty bad and it could get a whole lot worse) I agree. I pretty much have accepted that even if I do all the sensible things I might still end up in a wheelchair but the thought of losing my sight is still far more terrifying.

infofarmer 11y ago

Not diabetic here, but with progressing myopic retinopathy of unclear aetiology. There is mostly random common sense advice on how to prolong one's retina usefulness, which different doctors mention different pieces of, but the unfortunate and exasperating part is the surprising lack of research. E.g. we still don't know what makes our eyeballs grow or stop, and there's been about two or three original attempts at investigating it (only one with humans last I checked). On the other hand, we do have ample research that disproves or undermines most of the common sense advice (e.g. eye rest every hour, eye exercise, keeping fit, etc). Conflicting schools of traditional medicine do not help as well: you could get the opposite opinion on laser treatment (for retina) and scleroplasty depending on whether the specialist is from the US or Europe. My hope is platforms like HealthKit will enable massive new research into this. Alternatively, cyber-eyes.

gleb 11y ago
Is scleroplasty still practiced outside of Eastern Europe?
jarfil 11y ago
I was hoping for cyber-eyes long before I learned I might go blind. UV, IR filters, micro and tele, virtual display, recording... Now I'm hoping for cyber-eyes before I go blind.