Islet transplants - thoughts/experiences?

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Tristan13

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Type 1
I’m 24yo and was diagnosed with Type 1 Diabetes 10 months ago. Since then, I’ve spent a lot of time reading up on treatments and future cures. I keep coming across islet cell transplants. While not a cure, it does sound as though it can massively reduce your dependency on insulin, making day to day life easier with fewer injections and less variable blood glucose levels. I know this is a relatively unusual treatment (only 150 or so performed on the NHS between 2008 and 2015, or you can pay around $50k-$90k to have it done in the US), but does anyone have any experience of it or thoughts on it? It’s something I’d be curious to investigate
 
Hi @Tristan13 , whilst transplants seem like a wonderful thing they are not without their risks, plus there is the lifelong dependence on some VERY nasty anti-rejection drugs.

I have a friend who had a multi-organ transplant due to non-diabetic kidney failure. When the kidney became available she was offered a pancreas as part of the package. She took it.

She is eternally grateful for her donated kidneys. Yes, kidneys. Her first failed due to the cause of her renal failure being put down to diabetes. When that failed, it was clear it was due to something else.

She is gratefull for her hugely improved life, and being untethered from dialysis several times a week. She likes not having T1 diabetes any more, but is clear she’d take back the diabetes in a heartbeat if she could ditch the anti-rejection meds.

I’m not T1, so have no skin in the game, but transplants really aren’t to be considered lightly.
 
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I’m 24yo and was diagnosed with Type 1 Diabetes 10 months ago. Since then, I’ve spent a lot of time reading up on treatments and future cures. I keep coming across islet cell transplants. While not a cure, it does sound as though it can massively reduce your dependency on insulin, making day to day life easier with fewer injections and less variable blood glucose levels. I know this is a relatively unusual treatment (only 150 or so performed on the NHS between 2008 and 2015, or you can pay around $50k-$90k to have it done in the US), but does anyone have any experience of it or thoughts on it? It’s something I’d be curious to investigate

It’s the anti-rejection drugs that are the barrier @Tristan13 That and getting the islets to transplant. It’s more of a ‘last resort’ treatment. However, hopefully there will be a cure for Type 1 - we’re getting closer every day.

Another thing to add is that even if we could get lab-engineered ‘neutral’ islet cells that we wouldn’t reject so wouldn’t need anti-rejection drugs, our own immune system would just ramp up the auto-immune reaction that caused our Type 1 in the first place by attacking our islets cells and attacking any new islet cells we implant. People like Diabetes U.K. and JDRF are working really hard to find a solution to this. The science has come on in leaps and bounds but we’re not quite there yet.
 
Like the others have said, the anti-rejection drugs put me off.
I do not expect a cure in my life-time but we are getting closer and, for now, technology is making our lives much easier.
Given I expect no cure, I invest my mental energy into finding a way to manage my diabetes with the tools available rather than worrying about what may not be or at least I cannot influence ... at least, not in my lifetime.
 
I’m really hoping that you’re a centenarian @helli 😛

I’ve always been very cynical about a cure, but recent advancements look promising, I think.
 
I’m really hoping that you’re a centenarian @helli 😛

I’ve always been very cynical about a cure, but recent advancements look promising, I think.
Not yet but i don’t see why I couldn’t be.
But then, I wouldn’t be high up the list for the cure so I still think it’s worth investing my mental energy into diabetes management.

I really hope there is a cure in the lifetime of most of our forum members. Unlike you, I am still cynical. Partially because, compared to type 2 (but not MODY), we are in the minority so there will be less investment in Type 1.
I also fear, given the price of insulin in the USA, “big pharma” may not want to make the investment into the research and cure. But then, I am aware I am in the field of conspiracy theories.
 
I agree the answer won’t come from ‘big pharma’ @helli It will come from diabetes charities and very focussed researchers. Many of the people working on a cure have very big incentives to find one: they have children with Type 1 and/or have Type 1 themselves.

You might have seen my post the other day about a cure where I mentioned a massive £50miliion donation to Diabetes U.K. and JDRF:

https://diabetestimes.co.uk/steve-m...illion-into-the-race-to-cure-type-1-diabetes/

I’ve also been googling (I didn’t used to do this because it was just depressing) and reading about some of the trials is encouraging. Still a way to go, of course, but oh how I’d love to never have to think about carbs and insulin again! I had a brief moment the other day when I got a sudden flashback of what it was like to go out for a meal and just eat. It was a lovely memory and it didn’t seem almost 30 years ago. I’m really looking forward to doing that again, and to going out with just my phone and a bottle of water and hiking all day.
 
Still a way to go, of course, but oh how I’d love to never have to think about carbs and insulin again!
I think it's plausible (or not impossible, anyway) that there'll be ways of preventing type 1 in the next 20 years (in wealthy countries willing to pay for it). I'm less sure about cure, but maybe that'll turn out not to be much harder.

I'm basing that on some of the opinions of interviewees on a podcast episode I mentioned earlier who sounded (to me) unusually optimistic: https://forum.diabetes.org.uk/board...a-for-type-1-diabetes-podcast-episode.103469/
 
Not yet but i don’t see why I couldn’t be.
But then, I wouldn’t be high up the list for the cure so I still think it’s worth investing my mental energy into diabetes management.

I really hope there is a cure in the lifetime of most of our forum members. Unlike you, I am still cynical. Partially because, compared to type 2 (but not MODY), we are in the minority so there will be less investment in Type 1.
I also fear, given the price of insulin in the USA, “big pharma” may not want to make the investment into the research and cure. But then, I am aware I am in the field of conspiracy theories.

It's an interesting theory.
But many insulins are out of patent.
The states are trying to introduce legislation to cap insulin costs.
So "big pharma" will be seeing very severe hits to that cash cow.

Fortunately there will always be a new cure for something coming along to keep their profits up, which is why they spend so much on research.
It could indeed be an anti-immune suppressant, if you were cynical, you'd say they would design it to be a dose repeated at short intervals initially, but even then, other companies would make longer lasting versions, and eventually make a shot for life.
 
I agree the answer won’t come from ‘big pharma’ @helli It will come from diabetes charities and very focussed researchers. Many of the people working on a cure have very big incentives to find one: they have children with Type 1 and/or have Type 1 themselves.

You might have seen my post the other day about a cure where I mentioned a massive £50miliion donation to Diabetes U.K. and JDRF:

https://diabetestimes.co.uk/steve-m...illion-into-the-race-to-cure-type-1-diabetes/

I’ve also been googling (I didn’t used to do this because it was just depressing) and reading about some of the trials is encouraging. Still a way to go, of course, but oh how I’d love to never have to think about carbs and insulin again! I had a brief moment the other day when I got a sudden flashback of what it was like to go out for a meal and just eat. It was a lovely memory and it didn’t seem almost 30 years ago. I’m really looking forward to doing that again, and to going out with just my phone and a bottle of water and hiking all day.

Whilst a £50m donation to DUK is extremely generous, the harsh reality is that will hardly scratch the surface in moving towards a cure. Research is very expensive to conduct. The guy in the lab, with the test tube (or whatever) is just the tip of a very large iceberg.

I'd be curious to know the investment made, albeit by a commercial enterprise, to get the Libre to market, and the time frame for a return on on the investment.

Whilst DUK's investment is made by a charity, the researchers, and support in the research teams still have to be paid.

T1 is a horrid condition I am grateful not to live with, and I would be delighted if it could be cured tomorrow, but I'm not so sure
 
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