[Projectiboga]

Hi type 1 here. Since our errant immunity is localized on the insulin producing beta cells being on immune supressants would still be better than being insulin deoendent. Type 1 diabetes is a wild condition, when my blood sugar drops, subsections of my brain switch off. Low sugars are very emotionally bleak. There is a whole set of post traumatic stressors as part of this. 35 years ago I could just walk into a pharmacy and buy insulin without a prescription, maybe the pharmacist might as a couple of questions to at least try and be sure I need it, and that insulin was maybe $30 cash with no insurance and that was enough for a month. So everything might be $70 for an entire month w 5 blood sugar tests per day. Now a months supplies is in the hundreds of dollars. This stuff doesn't involve much more to manufacture, just layers of beauracy and markups. So yes having to take a cheap pill or two every day with the worst case being a revertion to being insulin dependent is worthwhile. Now side effects of the immune drugs might maybe be worse, but I doubt that. And this is a pilot to get FDA approval to test genetically modified beta cells that a type 1 wont destroy. Thanks for any understanding and compassion you can bring to this discussion.

[ainiriand]

My wife has a closed-loop system here in Germany, that is a small pod she changes every 3 days with the insulin loaded into and a wireless monitoring device in the arm that syncs to the phone. She is way into 95% or more in range and she lives a normal life. I think immunodepressants would not be the solution for her.

[thecosas]

I've had Type 1 diabetes for over 30 years and this is me. I still bolus for meals, etc. but am set up with Loop [0] on my phone and watch, omnipod insulin pumps, and a Dexcom G7 CGM for glucose readings. It's been fantastic. There are other open source projects as well, including Trio [1].

While these treatment options are so much better than even 10 years ago, the supplies can get very expensive if you don't have health insurance (in the US anyway). Luckily I do.

One company working on functional "cures" is Vertex [2]. They have one which requires immunosuppressive drug therapy alongside stem cell treatment (VX-880) and another which involves encapsulated stem cells which does not (VX-264). I'm sure there are many other companies working similarly to the one highlighted in this article.

Personally, given the great control I have right now, my insurance covering a good portion of the supplies, and the relative ease of use of the Loop app, I wouldn't take immunosuppressive therapies.

That said, I know the calculus is different for everyone; it's really a matter of personal circumstance and in some cases, luck.

Either way, I'm glad that research is being done and scientists are working on these various approaches. It's been an incredible 30 years I've been able to see with therapies advancing!

[0] https://loopkit.github.io/loopdocs/

[1] https://docs.diy-trio.org/en/latest/

[2] https://www.vrtx.com/our-science/pipeline/type-1-diabetes/

[cut3]

Similar story for my partner in the USA.

[zbyforgotp]

What is the range that she is keeping?

[ainiriand]

70-180.

[sgmoore]

> Since our errant immunity is localized on the insulin producing beta cells being on immune supressants would still be better than being insulin deoendent

As a Type 1 diabetic, I'm not sure I would agree. Surely immune suppressants would suppress our whole immune system not just the faulty bit which opens us up to all sorts of problems. I don't think that is someone I would like to risk just to avoid taking insulin. Mind you I have to confess my attitude might be affected by the fact that I don't have to pay for insulin.

[jcims]

My youngest was diagnosed with type 1 diabetes at 14 and it has been a tremendous emotional and physical burden on her. It's so encouraging to see research in this area and the faintest glimmer of a hope for a hope that she'll find relief.

[boltzmann-brain]

is it possible for a type 1 diabetic to not know and live their life fully untreated? By this I don't mean every type 1 diabetic, what I'm asking is whether it's possible for someone to be like this, due to their specific health circumstances.

[TrackerFF]

My in-law (brother) got what is called diabetes type "1.5", or LADA (latent autoimmune diabetes in adults), at the ripe age of 40.

It is like type 1, but much, much slower progressing - hence why it shows up at adult age, compared to childhood. Unlike type 2, you can't keep it under control by lifestyle changes. My in-law is a physically fit person with a good diet, and has been his whole life.

In any case, after the onset of symptoms, he had to get treatment. No treatment leads to further organ damage, which eventually leads to death.

[dghughes]

Possibly caused by a virus. A person can develop type 1 diabetes from the effects of a virus like measles and other viruses. I don't think many people are aware of that.

[9baka]

Autoimmune conditions can stem from viral infections, yes. But most of the time type-1 diabetics have a very weak phenotype of the disease, that is to say, the patient has pancreatic antibodies (specifically beta-cell antibodies) and produces them very, very slowly. According to this source, half of all "new cases" (whatever that means) occurs in adults: https://diabetesjournals.org/care/article/44/11/2449/138477/...

[titusjohnson]

My partner is a rare example of this. A little over 2 years ago at the age of 37 she was diagnosed as diabetic and put on metformin. The doctor thought it was LADA, or Type 1.5. The then the doctor kinda.... forgot about her? Historically he's been a terrible primary care doctor, just shoves pills and has no discussions so I wasn't super surprised. I'd been asking her to switch doctors for 3 years at that point due to some bad pill prescriptions that sent her suicidal. She was on metformin for 18 months with no meetings with her doctor beyond switching from an instant release to an extended release due to stomach pain. She got really irritated at me for suggesting that she be touching base with her doctor and progressing the care along, so I just dropped the topic and helped with carb counting, meal planning, and paid for a personal trainer.

About 6 months ago she suddenly started dropping weight. Extreme exhaustion (winded after going up a flight of stairs), dropped 30 pounds in two months, she was starting to get skeletal. Still not being active with her healthcare, but when she went under 110lbs for the first time since she was 14, she finally found the motivation she needed to get proactive and quickly found a better team of doctors who diagnosed her with Type 1 and put her on Insulin immediately.

Today we're putting her 2nd Omnipod on her for insulin delivery. She should get a closed loop system soon, I guess the iPhone support for her Omnipod+Dexcom combo is still going through FDA approval. Her new team says she's lucky to be alive at all. They've been going through her extensive medical history, pointing at occasions when she was hospitalized during her menses and saying "here you were going through diabetic ketoacidosis, that's why you were vomiting constantly", "every evening you're going critically low, that's why family thought you were a closet alcoholic", and "on average during the day your blood glucose is far, far too high, that's why you drink and piss gallons of water per day but are never sated".

So... I guess yes you can get lucky and survive, but with symptoms strong enough that it _should_ be caught.

[thecosas]

You may want to look into Loop [0] or Trio [1] if you don't want to wait for FDA approval on a closed loop system. They have pretty thorough guides, but I know it can be a lot to take on as the person who doesn't have Type 1 and some endocrinologists aren't supportive of the DIY options. That said, both have great communities who are very supportive and helpful, not just with the software. Best of luck to your partner!

[0] https://loopkit.github.io/loopdocs/

[1] https://docs.diy-trio.org/en/latest/

[titusjohnson]

Thank you for the recommendations! If I had the condition you can bet your ass I'd be building these, both look fantastic. I'm going to bookmark both so I can take the time to read their docs later -- Diabetes management from the POV of a developer is right up my alley and I see tons of interesting info in there already.

There is no way I'm bringing these up to her, though. For my own self-preservation. Over the last few months we've had a long-running argument about the operation of her Dexcom glucose monitor -- she's been convinced that it requires a continuous, active internet signal to function. Her proof was that every time she went into the basement at work, her Dexcom stopped reporting her glucose levels. When she comes upstairs, then she suddenly gets notified that she's been spiking or dipping for the last hour.

Everything under the sun, included the sun (remember that solar flare the other week? Yeah that was also pointed at as a problem) has been blamed for her Dexcom not informing her of dips and spikes. Yesterday evening her new Omnipod app told her to stop enabling Airplane Mode or BatterySaver, as these toggles interrupt bluetooth communications. She's been turning those on every time she goes into the basement at work to save battery.

It's just best if nothing I have touched or created is involved in any way.

[Projectiboga]

Yep weight is a basic vital statistic. Everyone should weigh themselves at least once a week.

[solveit]

I'm not quite sure how exactly to interpret your question, but untreated type 1 diabetes usually kills you within five years of diagnosis.

[boltzmann-brain]

i'm asking about what may happen when the illness isn't, in your words, usual

[looperhacks]

It's not possible. Type 1 diabetes stops the production of insulin, which is generally required for survival.