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Stem cell therapy

1

13h

Active Member
Messages
30
Hi,
After suffering 8yrs with type 1 , considering seriously treatment abroad , Tried for help in uk , but most only interested in raising money . AWARE may not work but the effects of type 1 are too much . Does anyone have info on treatments abroad that have worked
 
Just a T2 here, but honestly... This is a global forum. If there was something that really, truly cured T1, this place would explode in such a mass of confetti, even the T2's would sit up and take notice. So far, it hasn't.

I'm sorry.
Hugs,
Jo
 
Sorry 13h, but there is no cure for T1, and if you're a T1, insulin treatment (possibly with or without other drugs) is almost certainly going to be the only way forward. It takes time to adjust and its a continuous learning experience. I've been T1 for 63 years, and still going forward. It can be scary, but I've always seen it as a challenge and my mum told me in 1960 'you're in charge of it, it's not in charge of you'.
I am surprised your GP and/or diabetic liaison team haven't been more forthcoming, please talk to then and tell them your concerns/fears. There is a whole raft of support out there, but I appreciate its not always easy to find.
Personally, I've treated my management as an art not a science, in that you won't always get 'perfect' blood readings, but heck I still have fun and can still achieve a reasonable hba (41 last month).
T1 is a pain in the butt, but persevere and realax !
Good luck
 
13h said:
Hi,
After suffering 8yrs with type 1 , considering seriously treatment abroad , Tried for help in uk , but most only interested in raising money . AWARE may not work but the effects of type 1 are too much . Does anyone have info on treatments abroad that have worked
Click to expand...

It's not a question of "may not work". There is no such thing as treatment to make your pancreas work again. What you are asking about does not exist.

If this existed, it would be international news. It would be the biggest breakthrough in diabetes treatment since 1922 and we would never hear the end of it.
 
theoretically, you can do a pancreatic transplant, but practically in order for you to be assigned this operation, your kidneys must at least fail, besides, you will have to take immunosuppressants all your life (insulin therapy is considered safer), and the transplanted organ will work on average for only 15 years
What's so terrible happened to you in 8 years of diabetes? complications usually start later
 
From what I’ve read (research summaries) the stem cell treatment only works if stem cells can be taken from a T1 patient in the very early days when there are still sufficient beta cells to harvest.
I agree, it seems like a T1 Holy Grail.
 
Hi
Thankyou everyone for your replies. I believe in America a type 1 person was cured or maybe I am mistaken. The FDA stopped further resherch into stem cell therapy , but that is only in America. I looked into 2 places clinics one in Spain and one in India , doing treatments , the one in india does say no guarantee, and if does work , May return later in life. I offered myself for trials after being told I had lymphoma , but 2 places , one for diabetes I couldn't do for I had lymphoma and vice Versa for lymphoma. I was told 2yr aga I only had months to live. I did alternative therapies holistic type eating etc. I feel they've helped but feel I'm going. To die so would like to help others by offering myself for possible treatments to help others.
With regards for help by gp and diabetic team I was told by a Councillor about a Dafna course to help with eating, however it was not available in my town , having overspent and no one trained and I offered to pay to do in other towns , but hit by bureaucracy, so wrote to my MP for funding my diabetic team , only to get a diverted reply from NHS head saying no cure for type 1 and ignoring Dafna course subject
Fairygodmother said:
From what I’ve read (research summaries) the stem cell treatment only works if stem cells can be taken from a T1 patient in the very early days when there are still sufficient beta cells to harvest.
I agree, it seems like a T1 Holy Grail.
Click to expand...
 
13h said:
I was told by a Councillor about a Dafna course to help with eating, however it was not available in my town
Click to expand...

if you want, we can explain DAFNE to you without any courses (not as good as professional people, but still). This is an insulin regimen that allows you to eat whatever you want. I guess if you use insulin for a long time, then you use it anyway, you just don't know that it's called dafne. The point is that you should know how many units of insulin you need for 10g of carbohydrates and know how quickly carbohydrates and insulin will act and inject the correct dose at the right time. This is not a magic pill, it is quite a lot of mathematical calculations for each meal.
 
Hi
Zhnyaka said:
if you want, we can explain DAFNE to you without any courses (not as good as professional people, but still). This is an insulin regimen that allows you to eat whatever you want. I guess if you use insulin for a long time, then you use it anyway, you just don't know that it's called dafne. The point is that you should know how many units of insulin you need for 10g of carbohydrates and know how quickly carbohydrates and insulin will act and inject the correct dose at the right time. This is not a magic pill, it is quite a lot of mathematical calculations for each meal.
Click to expand...
Hi thankyou, I learnt myself what to eat, how much etc . Being told type 2 at first , I changed my diet , it worked for my type 2 mother , she no longer diabetic and her high blood pressure came down.
I've learnt to change my diet to eating proteins and fats Cheese, yogurts etc and quick exercise , together with herbal drinks etc , result being I don't need to take lots of insulin. I get hypos daily . I eat less but more often, and a bit more b4 bed ,etc. Diabetic team discharged me as I was managing my diabetes well , concerned they don't have enough funding to keep type 1 Diabetics under reviews to give support and more assistance to this life threatening illness.
 
13h said:
Hi

Hi thankyou, I learnt myself what to eat, how much etc . Being told type 2 at first , I changed my diet , it worked for my type 2 mother , she no longer diabetic and her high blood pressure came down.
I've learnt to change my diet to eating proteins and fats Cheese, yogurts etc and quick exercise , together with herbal drinks etc , result being I don't need to take lots of insulin. I get hypos daily . I eat less but more often, and a bit more b4 bed ,etc. Diabetic team discharged me as I was managing my diabetes well , concerned they don't have enough funding to keep type 1 Diabetics under reviews to give support and more assistance to this life threatening illness.
Click to expand...

If you have a lot of hypo, then you need to either eat more carbohydrates or inject less insulin. It is forbidden to recommend changing the dose of insulin here, and I recommend asking your doctor for advice or monitoring BG very carefully when changing the dose. But it seems you are really doing quite well. With t1, a low-carb diet is not necessary at all (personally, I eat whatever I want, but I can't say that I like carbohydrates), because the problem is not that you have reduced insulin sensitivity as with t2, but that your insulin-producing cells are dead. Although with t1, insulin resistance is also possible. I think you already understand quite well what carbohydrates affect you. In general, to use dafne, you need to know how much mmol/l 10g of carbohydrates increase your BG, and how much mmol/l a unit of insulin reduces this. In addition, to know that with high BG, insulin resistance increases and that fats slow down the absorption of carbohydrates (therefore, one injection is not enough for pizza). But you already know that, don't you?
 
Zhnyaka said:
If you have a lot of hypo, then you need to either eat more carbohydrates or inject less insulin. It is forbidden to recommend changing the dose of insulin here, and I recommend asking your doctor for advice or monitoring BG very carefully when changing the dose. But it seems you are really doing quite well. With t1, a low-carb diet is not necessary at all (personally, I eat whatever I want, but I can't say that I like carbohydrates), because the problem is not that you have reduced insulin sensitivity as with t2, but that your insulin-producing cells are dead. Although with t1, insulin resistance is also possible. I think you already understand quite well what carbohydrates affect you. In general, to use dafne, you need to know how much mmol/l 10g of carbohydrates increase your BG, and how much mmol/l a unit of insulin reduces this. In addition, to know that with high BG, insulin resistance increases and that fats slow down the absorption of carbohydrates (therefore, one injection is not enough for pizza). But you already know that, don't you?
Click to expand...
Hi thankyou for yr advice, I find taking insulin causes my sugars to be like a bouncy ball. I do take carbohydrates, but try to replace them with proteins.
It would have been nice to experience the NHS Dafne course myself, thankyou for the bestie link
 
HI
Thankyou everyone, I contacted clinic in spain and in india. India being the cheaper , they sent me an itinerary, it appears they will do a bone marrow extraction and reinject stem cells . As I am expected not to live long etc. My children and family say no harm in trying.
Just a shame that uk diabetic charities aren't doing such resherch and unfortunately having asked some of them for funding , they don't do , some Sent me forms on how to leave money to them in my will. My u16 children said they giving up their future education savings ,despite my objections , they overruled me saying they'll collect money doing summer jobs!
Anyway I am still looking into the treatments and would like to here from people who have had treatments abroad.
If the UK can do resherch to clone a sheep, why can't it afford to do treatments that will help type 1 people.
 
Fairygodmother said:
From what I’ve read (research summaries) the stem cell treatment only works if stem cells can be taken from a T1 patient in the very early days when there are still sufficient beta cells to harvest.
I agree, it seems like a T1 Holy Grail.
Click to expand...
www.nytimes.com

A Cure for Type 1 Diabetes? For One Man, It Seems to Have Worked. (Published 2021)

A new treatment using stem cells that produce insulin has surprised experts and given them hope for the 1.5 million Americans living with the disease.
www.nytimes.com www.nytimes.com
I don't think his cells were taken on early days
 
BruceT said:
Sorry 13h, but there is no cure for T1, and if you're a T1, insulin treatment (possibly with or without other drugs) is almost certainly going to be the only way forward. It takes time to adjust and its a continuous learning experience. I've been T1 for 63 years, and still going forward. It can be scary, but I've always seen it as a challenge and my mum told me in 1960 'you're in charge of it, it's not in charge of you'.
I am surprised your GP and/or diabetic liaison team haven't been more forthcoming, please talk to then and tell them your concerns/fears. There is a whole raft of support out there, but I appreciate its not always easy to find.
Personally, I've treated my management as an art not a science, in that you won't always get 'perfect' blood readings, but heck I still have fun and can still achieve a reasonable hba (41 last month).
T1 is a pain in the butt, but persevere and realax !
Good luck
Click to expand...
www.nytimes.com

A Cure for Type 1 Diabetes? For One Man, It Seems to Have Worked. (Published 2021)

A new treatment using stem cells that produce insulin has surprised experts and given them hope for the 1.5 million Americans living with the disease.
www.nytimes.com www.nytimes.com
 
if everything works out, tell us. It will be really inspiring.
I will have so many questions :D
 
Hi 13h. Yes I have seen these articles, and certainly there seems some reason to be optimistic. Development though is at a very early stage, and one of the challenges (apart from the FDA requirements re further evidence/testing) is the need for massive doses of immunosuppressive drugs, which themselves can have serious side effects.
There is most certainly some hope in the future for a cure, but, its still very early days, and in the meantime management with insulin, healthy eating and exercise is the best way to lead a good life with T1.
Since the 1920s there have been massive strides in technical ways of improving/assisting management (blood test kits, sensors, pumps,insulin pens etc) so life today is certainly much easier than it was in 1960. T1 is still a pain in the butt, but I personally believe there are worse things one could have to contend with. As indicated, I'm very optimistic there will be a cure in the future, but that's certainly a few years away, so for today......go for it with the tools you have.
Good luck
 
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