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Sean122

Sean122

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Hello Everyone, New here. My wife and both of my daughters have Type 1. My wife was diagnosed almost 38 years ago when she was 13, and my daughters were both under the age of 5 when they were diagnosed. Now they are 25 and 21.
We have seen lots of gradual improvements in insulin and monitoring equipment over the years but still waiting for that Eureka/breakthrough moment.
Does anyone think anything new is just over the horizon. Would love to think that my wife and daughters could look forward to big advances.
Glad to be here
Sean
 
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Whilst oh yes I'd like there to be a cure I suppose, cos I always feel for the kids who get lumbered with it - when I consider it more and because there is absolutely a hereditary problem of some sort with at the very least Type 1 (but a greater chance with men passing it on to their kids than us ladies apparently) it gets a LOT more complicated.

They are making breakthroughs with genetic testing for some cancers cos some of them are genetic - but how far do you go? Sorry - old Adolf was a bit too keen on that sort of thing methinks.

I'll be 100% truthful - despite being told in 1972 that the NHS expected they'd find a cure within the next 10 years I am no longer actually expecting one in my lifetime! Not that I ever did actually - after all, the Ancient Greeks talked about an illness which has been interpreted as diabetes, yet it was only 100 years ago that they managed to discover that exogenous insulin could treat it.

But also in truth - you just don't know, do you?

Oscar Wilde was right, wasn't he? - it is better to travel hopefully than to arrive! So I continue to travel ......
 
For me the closed loop system that I am now using (Medtronic 780 with sensor and transmitter) is a massive breakthrough. If you haven’t tried it and can access this it is well worth it.
 
SB2015 said:
For me the closed loop system that I am now using (Medtronic 780 with sensor and transmitter) is a massive breakthrough. If you haven’t tried it and can access this it is well worth it.
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I did read about this in Balance magazine. We are in Herts and in the past have struggled to get some things on prescription. Many years ago now, but i remember trying to get Glargine prescribed, and it was like pulling teeth. My youngest isnt keen on a pump but my eldest and my wife would be. Their biggest problem is actually being able to speak to the diabetic team in real time. Always leaving messages and then missing return calls. I will get them to look into this.
Thanks
 
Sean122 said:
I did read about this in Balance magazine. We are in Herts and in the past have struggled to get some things on prescription. Many years ago now, but i remember trying to get Glargine prescribed, and it was like pulling teeth. My youngest isnt keen on a pump but my eldest and my wife would be. Their biggest problem is actually being able to speak to the diabetic team in real time. Always leaving messages and then missing return calls. I will get them to look into this.
Thanks
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A pump would be a good first step, if they are interested. (James Norton happily manages on MDI and pumps are not for everyone)

Are those interested in a pump in the care of their GP? If so they would need to ask for a referral to the specialist team, often at the local hospital, as you can only get pumps through them, since they will be responsible for providing the pump training. Each hospital only supports certain pumps so it is worth finding out what is available locally.
 
Welcome @Sean122 🙂 I used to be very pessimistic about a cure, but in the last few years I’ve got my optimism back. There have been so many advances towards it. It’s surely just a question of time. We’re so much closer now.

As for tech, the Libre and CGMs like Dexcom have been fantastic. They give peace of mind as well as reducing fingerpricking and just making life easier. I have a pump and they’re great when all’s going well. I’ve had mine for almost 20 years. I do take pump breaks though as I find the pump cannulas can cause skin issues over time, which affects absorption. Obviously MDI can too, but I think there’s a particular issue with pump cannulas. I was offered the chance to loop with my pump but turned it down. I did, however, leap at the chance of a Dexcom.

For new tech, I’d like to see an answer to absorption problems (a new insulin delivery method, etc), but mainly I’d like to see a cure which worked without the need for immune-suppression. So, lab-engineered ‘neutral’ islets, implantation and protection from the Type 1 immune attack. Actually, having said that, what would be better is if they could stop the immune attack and our own islets could repopulate. That would be great.

I’d also like to see an answer to what triggers Type 1. It’s always annoyed me not to know, but also knowing the triggers might mean we could prevent new cases better.
 
I’m definitely optimistic for huge strides in management of diabetes. I think closed loop technology is a huge step (I will be looking at diy closed loop in the coming months having just started a Omnipod dash pump under 2 weeks ago).

I found “the state of the cure for type 1 diabetes” a really interesting read (very much focused around US trials/ breakthroughs. I do not live my life waiting for a cure however I do find it important to keep myself informed of new tech/ insulins etc as have found I really have to push my diabetes team to get these.

In terms of one of your younger daughters not being keen on a pump, I totally get that, I have been t1 for 26 years and only in the last year I considered a pump and had to seek this out and push for it to happen. I managed very well on mdi as do many others. It is important though to make sure that these options are presented to her in the future as a no now isn’t always a no forever (hopefully the diabetes team will do this)
 
Sean122 said:
Hello Everyone, New here. My wife and both of my daughters have Type 1. My wife was diagnosed almost 38 years ago when she was 13, and my daughters were both under the age of 5 when they were diagnosed. Now they are 25 and 21.
We have seen lots of gradual improvements in insulin and monitoring equipment over the years but still waiting for that Eureka/breakthrough moment.
Does anyone think anything new is just over the horizon. Would love to think that my wife and daughters could look forward to big advances.
Glad to be here
Sean
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Hi Sean, welcome to the forum! We're glad to have you here. So many advancements have been made over the years and scientists and researchers are always working to find new treatments, so really hopeful that we'll see some revolutionary breakthroughs our lifetime. Here's to hoping!
 
I think the pace of change is only going to increase! Things like CGM which used to be vanishingly rare are now almost commonplace, and while hybrid closed loops aren’t quite an ‘artificial pancreas’ yet (to my mind anyway), theyare able to do a reasonable job of improving time in range, and reducing some of the burden of diabetes management.

Stem cell possibilities are emerging, and there is great work being done (quite a bit funded by DUK) identifying those at risk, and reducing the changes that they will go on to develop T1.

I’m not sure a ‘cure’ will really apply to me, with 30 years of T1 under my belt, but it would be lovely to think that we may be coming very close to the last generation to have T1.
 
I am confident that technology is improving which is making management easier and risk of complications much less so I do not see diabetes affecting my lifespan as it has for generations before us (and the numbers still suggest).

I do not expect a cure. I am more expectant that more research will continue in understanding the cause of Type 1 and, hopefully, stop it happening. That will mean that it could be eradicated by lack of new diagnosis rather than curing those of us already with it. As @everydayupsanddowns says we will see "the last generation to have T1". I don't have any evidence for this hypothesis, more a gut feel.
 
SB2015 said:
A pump would be a good first step, if they are interested. (James Norton happily manages on MDI and pumps are not for everyone)

Are those interested in a pump in the care of their GP? If so they would need to ask for a referral to the specialist team, often at the local hospital, as you can only get pumps through them, since they will be responsible for providing the pump training. Each hospital only supports certain pumps so it is worth finding out what is available locally.
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Thanks. Over the past few years the care hasnt been too good. Lots of back and forwards between the specialist team at the hospital and their GP. They never really get a chance to have a proper discussion. Always seems to be a case of looking at results since last time, suggesting a tweak and thats it
 
I've never NOT been able to have a conversation - and a laugh and a joke - with a consultant, ask em where they've been on holiday when they've had, in that partic case, more of a tan than usual, which was when my husband and I discovered he actually hailed from Kerala rather than anywhere else on that sub continent which we'd obviously both known for years, cos he told us he'd been 'home' to visit his family.
 
Sean122 said:
I did read about this in Balance magazine. We are in Herts and in the past have struggled to get some things on prescription. Many years ago now, but i remember trying to get Glargine prescribed, and it was like pulling teeth. My youngest isnt keen on a pump but my eldest and my wife would be. Their biggest problem is actually being able to speak to the diabetic team in real time. Always leaving messages and then missing return calls. I will get them to look into this.
Thanks
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I was offered the pump when I started planning my second pregnancy, and what a game changer it was! I had never even considered one as I was very well controlled with injections.
There are tubeless ones, if the issue is having a visible tube. The advantage of Medtronic is the loop system, but the tubeless one is hard to detect and you control it from a handheld monitor.
You can actually get a demo one to try, to see how you feel about it.
 
DiabetesLegacy23 said:
I was offered the pump when I started planning my second pregnancy, and what a game changer it was! I had never even considered one as I was very well controlled with injections.
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In the draft TA on HCLs one of the categories of people to be offered HCP are pregnant women, which makes complete sense to me.
 
It is so easier! When I was pregnant with my first I had to weigh all my food and the hormonal changes caused so much work! With the pump you can increase your basal so quickly, it's a breeze (well, sort of! )
 
DiabetesLegacy23 said:
It is so easier!
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And (I imagine) even easier once the thing can do some of it automatically. While the systems (at least for now) need hints when you eat, even if you forget they should resolve things eventually. Overall I can see why NICE want to give priority access for pregnancy.
 
It's for the health of both mum and baby. Yes carb counting is essential to have a pump, but when you're pregnant your insulin needs change dramatically within days and long acting insulin is harder to adjust.
I would recommend it to any diabetic planning a pregnancy because I experienced it with and without a pump. But, you have to be willing to learn carb counting otherwise it's useless
 
trophywench said:
I've never NOT been able to have a conversation - and a laugh and a joke - with a consultant, ask em where they've been on holiday when they've had, in that partic case, more of a tan than usual, which was when my husband and I discovered he actually hailed from Kerala rather than anywhere else on that sub continent which we'd obviously both known for years, cos he told us he'd been 'home' to visit his family.
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If it was down to me then it wouldn't be a problem but my daughter is 21 and so i don't get included in the conversations anymore. Whenever i suggest something for her to question its always, "Stop fussing Dad" !
 
Sean122 said:
If it was down to me then it wouldn't be a problem but my daughter is 21 and so i don't get included in the conversations anymore. Whenever i suggest something for her to question its always, "Stop fussing Dad" !
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I can imagine! I still tell my mum that and I'm way past 21!
 
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