Thankyou for your comments, from posts that there is no cure to a possible one is more positive attitude. I was surprised a hematologist consultant apologised to me after he rejected the idea of a simple ideal of a link between immunology, the pancreas and diabetes after rejecting my request for a biopsy and my rejection to start radiation treatment. A young member of his team suggested a bone marrow biopsy. Result being I didn't need radiation treatment after all.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
Hi just to say that the Bertie course is very well respected. I was originally scheduled to attend a DAFNE course in person, but broke my shoulder, couldn't drive, so had to cancel. Then COVID intervened - I did eventually get on to another DAFNE course 2 years later but only available online, so pragmatically a very similar experience to using Bertie.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 for replying , my original post tread is to find out about stem cell treatments if anyone has experience . I see you are fortunate to be able to be in place to be offered the opportunity to do the Dafna course . I Feel a bit belittled at the unfairness my town has not been lucky enough to be given funding , maybe they mismanaged it. Thankyou for showing interest in what type of insulins etc. I am managing my diabetes well enough that the diabetic nurses discharged me , that doesn't mean I don't get diabetes related problems. I am focusing my attention on trialling a cure to reduced insulin, Not resherch on trying different alternatives of insulins, Would welcome posts on experience or info on stem cell treatments in uk or abroad .Hi just to say that the Bertie course is very well respected. I was originally scheduled to attend a DAFNE course in person, but broke my shoulder, couldn't drive, so had to cancel. Then COVID intervened - I did eventually get on to another DAFNE course 2 years later but only available online, so pragmatically a very similar experience to using Bertie.
Given the dire state of NHS resources, might your best option, if only to reaffirm what you've already learned about the interaction of your dietary choices with taking insulin. Are you willing to share what insulin(s) you use - I'm guessing as Type 1 you're on a MDI protocol? Have you asked for a CGM (you should be eligible for Libre 2 or Dexcom One).
How are you doing with the lymphoma now? To be honest, as a long term T1 who has been able to take advantage of the massive improvements in T1 tech since first diagnosed I am not expecting my T1 to kill me any time soon (touch wood) so in your position I'd be way more concerned about the lymphoma. I'm a little cynical about the motives of overseas stem cell experimenters. (Let's face it, there is no shortage of T1s seeking a cure so not sure why they would give you a place other than monetary gain, but I freely admit that I may be being overly cynical).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
Hi thankyou for replying , I do have a libre sensor, but like some have to check every hour, I did look into a pump, but as I manage to control the uncontrollable hyper and hypos daily with holistic type treatments , it's an hour by hour battle, I not keen on taken insulin . Also some friends /colleagues over the years past away , thier relatives common compliant was that gps and consultants didn't do things in time or botched up things.How are you doing with the lymphoma now? To be honest, as a long term T1 who has been able to take advantage of the massive improvements in T1 tech since first diagnosed I am not expecting my T1 to kill me any time soon (touch wood) so in your position I'd be way more concerned about the lymphoma. I'm a little cynical about the motives of overseas stem cell experimenters. (Let's face it, there is no shortage of T1s seeking a cure so not sure why they would give you a place other than monetary gain, but I freely admit that I may be being overly cynical).
If I weren't happy with my current treatment (mdi plus self funded dexcom) I would probably push for a pump (maybe a closed loop system???) as my next attempt to improve my diabetic control. I believe that this is becoming available on the NHS? And please tell me that you have access to a libre? Even if your hospital team have discharged you to your GP care all T1s are supposed to be getting cgms or flash sensors now.
Like the others, I will be fascinated to hear what transpires if you go for stem cell therapy but I have severe doubts as to whether it is a productive use of your time or money.
Good luck, whatever you decide to do.
Hi,I do have a libre sensor, but like some have to check every hour,
I’m very sorry but I think the reason no one has come forward on their experiences of stem cell treatments on the forum because there isn’t anyone here who has any experience of it.I was recently sent info of another clinic abroad ,With one of their old patients with type 1, apparently he was treated with stem cell type treatment long b4 the American person. It didn't eliminate his type 1, but his insulin intake was halved and less hypos and hypers so was very pleased with the outcome. Unfortunately no one in this forum has come forward with any experience good or bad on stem cell treatments.
It seems resherch in the UK are reluctant to share info on any treatments done if any, may be too much bureaucracy by nhs or laws.
I would like to hear from people whom been helped by the number of diabetes related charities.
Hi thankyou for your comments I have been looking into the type of treatment I will be doing abroad, unfortunately it seems no one in uk has reached the level, I found this attached article from a diffrent clinic giving a simple type explanation for anyone interested in finding solutions for type1I’m very sorry but I think the reason no one has come forward on their experiences of stem cell treatments on the forum because there isn’t anyone here who has any experience of it.
Sorry put wrong attachment -perhsps i can only put it down to my type1 , as already been through phase of it making me feel suicidal,- thanks for counselling eventually and new free Work healthbenefits !.Hi thankyou for your comments I have been looking into the type of treatment I will be doing abroad, unfortunately it seems no one in uk has reached the level, I found this attached article from a diffrent clinic giving a simple type explanation for anyone interested in finding solutions for type1
Thankyou. Having contacted to find about any resherch no mention that there is ANY ongoing , just requests for funding towards ; Unless you or anyone else knows otherwise. If anyone is aware of any actual resherch going on in the UK on actual stem cell therapy , please post as difficult to find any uk info. Please help as I want to avoid doing treatment abroad.I assume this article (https://www.diabetes.org.uk/about_us/news/stem-cell-therapy) describes the US research you mention.
I am confused about your statement that diabetes charities in the UK are not researching stem cells.
Diabetes UK (the charity, not the commercially funded organisation that hosts this forum) are funding stem cell treatment such as these ones: https://www.diabetes.org.uk/research/our-research-projects/midlands/lab-grown-beta-cells and https://www.diabetes.org.uk/about_us/news/funding-12-new-research-projects and https://www.diabetes.org.uk/about_us/news/exploring-stem-cells-for-diabetic-retinopathy (although this latter one is not for a Type 1 cure)
Have you contacted Diabetes UK directly to ask them?Thankyou. Having contacted to find about any resherch no mention that there is ANY ongoing , just requests for funding towards ; Unless you or anyone else knows otherwise. If anyone is aware of any actual resherch going on in the UK on actual stem cell therapy , please post as difficult to find any uk info. Please help as I want to avoid doing treatment abroad.
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