I just saw this post on Facebook from a woman named Katie Beth Hand. Her post reads as follows:
“Exactly one month ago I had an islet cell transplant to cure my (previously believed to be “incurable”) Type 1 diabetes. The last month has been an adventure every day. Lots of testing, lots of bloodwork, lots of trips to Chicago! Today, I did a Mixed Meal Tolerance Test and watched as the newly transplanted islet cells kicked into gear and brought my blood sugar into healthy range without any insulin.
For most people an average, boring day. For me, it felt like I had climbed Mt. Everest. I feel blessed beyond measure to be part of this clinical trial. I truly believe brighter days are here for all T1Ds! #eledon#clinicaltrial#handfamadventures#curingt1d#diabetes.”
I know that I am too old, probably, to get into any clinical trials (reaching 60 years with T1D as of April this year), but this certainly gives me hope for you younger folks that diabetes actually may be less of a burden for you in the future.
I hold out hope for @Liam-M and all those young ones out there (and the older T1Ds also who I’m sure would still LOVE to have some years in your lives, free of T1D management), that this or some other hopeful cure happens in their lifetime. But I always harken back to this post, by @Richard157, who was diagnosed in 1945… My First 70 Years With T1D - #4 by Richard157 . I don’t want to be a Debbie Downer, but I also hate getting my hopes up for Liam, then having them slashed. I continue holding out hope, though!
I know. I was told in 19966 that there “probably” would be a cure “in my lifetime.” Well, 60 years later… I still am waiting. However, I am a fairly optimistic person, so my sincere prayer is that there WILL be a cure for Liam and for others that they may see a “cure” sometime soon. NEVER give up hope!
I am always hopeful!!! I do believe of all the therapies I’ve read / heard out, a few seem more promising than others. This one is promising, and the one where the beta cells are coated with a gel cover to hide them from the immune system. Lots of research into many different areas but not focusing on where the problem truly lies – with the immune system WITHOUT forcing “Immunosuppressant drugs” onto the patient…I know that’s a deal breaker for most people who have T1D because why would someone trade managing T1D for a plethora of other sicknesses and/or diseases you may get as a result of your immune system no longer protecting you as adequately as it should.
So you’ve come back in time! Tell me, did we deal with climate change? Most important, 17,940 years in the future, are they still saying a cure is five years away?
True, but if a person has one autoimmune disease, chances are he will develop others in his lifetime anyway. The immune system already is messed up, or the T1D would not have appeared in the first place. Case in point: I have four autoimmune diseases— T1D, hypothyroidism, dermatomyositis, and Raynaud’s Phenomenon. All require medication, but the other really nasty one is the dermatomyositis which causes me to be on autoimmune suppressants for the rest of my life.
So would I personally get the transplant to possibly cure T1D? In a second! Would doctors try it on me since I already am immunocompromised? Not a chance.
We each must make choices as to what works the best for us. I would have risked the immunosuppressant drugs just to avoid dime further diseases or complications from T1D. I am just glad children today may be given that choice.
Ha! Ha! I apologize for not proofreading my response better and for not getting my sticky keyboard fixed. Your response does pose some interesting questions, however. In another approximately 20,000 years, the Earth will have drifted roughly 1000 feet further away from the Sun. So mankind probably would be trying to figure out how to keep warm, especially if we have depleted all of our natural resources for heating our structures. Climate change already is causing swings in our “normal” temperatures, so imagine what it will do in 20,000 years! And as for a cure? Yes, it probably still will be only five years away!
This sounds promising! Though, I am one of those people who would not trade T1D for a lifetime of immunosuppressant drugs.
I am also, like many others here, skeptical. I was diagnosed in 1990, and that was, per the organization that was then known as the JDF, the “decade of the cure”…
Is this real? Does anyone have any links to the research? @ClaudnDaye you said:
But I don’t see any links; all @SAFA1 's original links seem to be facebook and when I clicked one of them I got spammed! (I don’t have a facebook.)
I’ve seen the various things about islet cell encapsulation before but not with “gel”. The ones I saw injected the cells into the liver so they could not possibly cure my T1D (I still have alpha cells; the injected cells would have to be in my own islets).
I’m honestly interested in reading the research; I may be somewhat cynical about it but I like to see people trying.
It seems to have long way to go, but appears promising. Again probably not for us old codgers, but may have promise for the younger folks. Here’s hoping!
Yes, the original link I posted was from Facebook – so there is always a great deal of doubt with such postings. Unfortunately, I got called away from the computer before I could go further. Apparently, most of the islet transplants from these stories are being done through the University of Chicago hospital affiliations, and if you follow those stories, you will find that these trials seem to have started in late 2024… so the science continues. TomH has provided some great links.
As many of you know, we have come a tremendous way from the days of reusing needles, boiling syringes, peeing on a strip to measure blood sugar, and not realizing what an important role diet (especially carbohydrates) and exercise actually play in control of T1D. So we HAVE made great strides, so I have hope that the science will continue to give us answers.
That’s a different approach from encapsulation. It alters the immunosuppression regime, summarised by a direct quote from your second link:
An investigational antibody could reduce the toxicity associated with immune suppression in islet cell transplantation for type 1 diabetes (T1D), according to new preliminary data.
I guess that works, sort of; the transplanted islet cells have their own glucagon mechanism but the still extant defective ones we came with get countered by the newly introduced beta cells. I.e. we still have excess and continuous glucagon production from the living alpha cells but at least the extra glucose from the liver is covered by the standard (but, IRC, slow) response from the new beta cells.
This may well be what the original reference is to.
Certainly the research needs to be reproduced, but are Eledon prepared to supply the antibody to independent researchers? I don’t know how this works, but it was funded by the JDRF:
This clinical trial is funded by Breakthrough T1D (formerly JDRF), with initial support from The Cure Alliance. Breakthrough T1D has also committed to fund a second study evaluating tegoprubart as part of a calcineurin inhibitor-free immunosuppression drug regimen to prevent islet transplant rejection in individuals with T1D and chronic kidney disease.
Possibly. They say “islet cells” without specifying which (maybe I missed that) and their source for the cells is cadavers, so maybe they inject the complete islets. I also couldn’t see where they injected them; injecting beta cells alone would only work (as a “cure”) if they injected them into our existing islets.
What I don’t understand is why they tested this by injecting anything. Possibly the only way they could get approval was by taking subjects who had already tried immunosuppression and had signs of kidney failure as a result.
If it works as described it might be a better potential approach for people with the autoimmune disorder but with remaining beta cells if the problem of beta cell regeneration can be solved:
Indeed, solving that problem maybe opens up possibilities for people with long term T1D where, quite possibly, the original autoimmune response has stopped (so no immunosuppression required, at least not immediately.)
That also applies to T2s such as yourself; having the beta cells regenerate would, potentially, allow the overload caused by insulin resistance to be handled. Not a cure but a way to deal with beta cells dying off.
The above link is to an abstract, the paper is a review paper and the full text is here:
It’s actually quite old, from 2019. The original paper above suggests getting the cells in the future from stem cells, not cadavers, which implies that they are thinking of individual cell types (probably just beta cells). The 2019 paper seems quite complete (although I presume out of date) but I’ve only skimmed the start so far.
@jbowler I just skimmed it before my morning coffee. It is interesting and I wonder if there is more current work in the field of β-cells as this paper is 6 years old.