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Has anyone heard of THIS many people with T1

V

victry77

Well-Known Member
Messages
260
You know I did a little counting exercise today. I have been diagnosed with T1 for two and a half years and within that time I've *indirectly* come across 52 other people with T1. When I say indirectly, I mean I haven't met them personally (bar one) but who other people have told me about.

Here's a brief example;

1. Agency worker at my workplace (the only one I've met)
2. Son of a workmate
3, 4 & 5. 2 nephews and aunty of a workmate
6. Brother of agency worker
7. Brother of another agency worker
8. Ex- boyfriend of a workmate
9. Old school friend of a workmate
10. My boss' uncle
11. My mum's line manager
12 & 13. Two elderly clients of mum (who does home care for elderly)
14, 15 & 16. Daughter & 2brothers of mum's workmate
17. Workmate of friend
18. Neighbour of workmate
19. Neighbour of another workmate
20. Sister-in-law of workmate

... and the list goes on until it gets to 52. In fact, when I got taken into hospital, the two nurses who saw to me in the observation ward told me that one had a T1 husband and the other had a T1 fiance. I mean, that's a lot, isn't it? And this is only in my own little stratosphere. Or, is it a lot? Everything I read about T1 was that it was rare, but I'm constantly hearing people who have it (and have only been recently dx)

Anyone else heard of loads of peole like this?
 
How did you get to find all this out victry, did you go round your work colleagues and family with a questionnaire? :?

Nigel
 
victry77 said:
You know I did a little counting exercise today. I have been diagnosed with T1 for two and a half years and within that time I've *indirectly* come across 52 other people with T1. When I say indirectly, I mean I haven't met them personally (bar one) but who other people have told me about.

Here's a brief example;

1. Agency worker at my workplace (the only one I've met)
2. Son of a workmate
3, 4 & 5. 2 nephews and aunty of a workmate
6. Brother of agency worker
7. Brother of another agency worker
8. Ex- boyfriend of a workmate
9. Old school friend of a workmate
10. My boss' uncle
11. My mum's line manager
12 & 13. Two elderly clients of mum (who does home care for elderly)
14, 15 & 16. Daughter & 2brothers of mum's workmate
17. Workmate of friend
18. Neighbour of workmate
19. Neighbour of another workmate
20. Sister-in-law of workmate

... and the list goes on until it gets to 52. In fact, when I got taken into hospital, the two nurses who saw to me in the observation ward told me that one had a T1 husband and the other had a T1 fiance. I mean, that's a lot, isn't it? And this is only in my own little stratosphere. Or, is it a lot? Everything I read about T1 was that it was rare, but I'm constantly hearing people who have it (and have only been recently dx)

Anyone else heard of loads of peole like this?
Click to expand...

I've og tan auntie in law with t1 and a friend of a friend and 7 people i met on the DAFNE course.

IF you think about it though, how many people do you think aren't educated about diabetes enough to know the difference between actual T1 diabetics and people with T2 that do or dont use insulin. your list actually may be shorter?

Theres about 61 million people in the UK, and about 2 million people with T1 diabetes (whcih i've just googled so may or not be accurate.

i also looked to see how many towns and cities are in the uk and that's about 1050, so simple math says there are about 1090 people in each town or city with type 1 diabetes.

Which is usually the size of an average senior school. which to me sounds very minimal.

yes i'm very bored :lol:
 
noblehead said:
How did you get to find all this out victry, did you go round your work colleagues and family with a questionnaire? :?

Nigel
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Well, people tell me. They know I'm diabetic so will often mention about someone they know or a relative. Three people that my mum knows from her work were all dx within a year that I was. Example, another work colleague came up to me the other week and told me her friend's (34 yr old) daughter had not long been dx and is in & out of hospital because she won't inject as she'd heard insulin can make you fat. I actually overheard a conversation between one of the agency workers and someone else saying sthat she must remember to pick up some lucozade as her little brother had been having a lot of lows lately. I just seem to be hearing it soooo often.

Hi, ebony. Yeah, there could be a few T2's in there, but I'm almost positive there isn't. I know quite a lot of people with T2 (off the top of my head 5 people that I work with) but I'm certain all the others are T1 (dx under 30 + insulin, etc). I know one workmate told me her brother was diabetic "like me" but that he was very overweight and started on meds but is now on insulin, so obviously she didn't know the difference (so I didn't put him on my list :wink: )
 
Hi

I have been a type 1 for 27 years and everywhere i go or people i talk to they all know someone with diabetes but 9 times out of 10 the people they know have type 2 diabetes which alot of non diabeteics don't know the difference between type 1 and type 2.

Tracey167
 
I'm actually married to a T1 diabetic as well as being a T1 diabetic..

Tell anybody that you have diabetes, they will know somebody, aunt, uncle even a friend of a friend who has diabetes, if you dig deeper then you'll find most are T2 diabetics the give away is when you'll asked if you take tablets or have to inject?

But how many diabetics I've met or heard about over the 20+ years I've been one, I've never thought about
 
jopar said:
I'm actually married to a T1 diabetic as well as being a T1 diabetic..

Tell anybody that you have diabetes, they will know somebody, aunt, uncle even a friend of a friend who has diabetes, if you dig deeper then you'll find most are T2 diabetics the give away is when you'll asked if you take tablets or have to inject?

But how many diabetics I've met or heard about over the 20+ years I've been one, I've never thought about
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Hi Jo,

Just being curious and nosey, but how have you found being married to a fellow type 1, has it been helpful in the respect that your partner knows all about the difficulties type 1's face having first hand experience himself, and can share or offer advice to one-another, or do you both find that you worry more about each others condition more than your own?

Nigel
 
I'm the exact opposite, in all my Type 1 years I've personally met exactly x2 type 1's until I did DAFNE last year when I met a further x5. So that's 7 in 25 years! Even when I lived in America I didn't meet even 1 type 1!! Type 2's however, they are everywhere and everyone is related to someone with type 2, including me :lol:

I've heard rumours there is a guy who works on the shop floor in the factory attached to my office, apaprently he injects in public (yey!) so I must seek him out at some point :wink:
 
Hi Nigel

It's a yes and no really :lol:

We've learnt off each other that's for sure and it does make it a lot easier to be able to brainstorm a tactic or two..

I think support wise I doubt that both having diabetes makes much difference, at the begining of our relationship is wasn't always easy, mind you at this time our relationship was taking flack from every direction you could think off :cry: very stressfull acutally lead to a 6 month seperation but did teach us one valuable lessons, that of working as a team through the good times and the bad...

It does bring home the fact that contro is very individual though, we've both have good control but if we tried to control our diabetes using the other one method then we would both be very soon up the kiber with out a paddle..
 
Thanks Jo,

Pleased you both have come through the bad times together and still together as a couple, it makes the good times all the more rewarding and enjoyable! :)

I can see where your coming from, control is very individual and what works for one doesn't necessarily work for another, but like Debloubed I've not met many type 1's in my time except when I attended the DAFNE course, so it is a first for me to hear of two type 1's living together as husband and wife................I need to get out more! :roll:

Nigel
 
I do know or know of quite a few people with type 1. People tend to come out of the woodwork or tell me about parents with type 2 once they know I have type 1. I find it interesting to see how they all manage it or don't, as the case may be. I hope you'll excuse my shorthands in my descriptions below.

1. My first cousin's daughter, 12, in Canada, high BS
2. and 3. Two of my third cousins, brother and sister, 18 (lots of exercise) and 14, both high BS
4. A friend of a friend, 40-ish, slim
5. Another friend of a friend, 40-ish, overweight, better BS control now he's on a pump
6. My half aunt - I only found this out recently! - overweight, got it at 40, like me (at 39)
7. People I've met at the hospital when getting my pump fitted.
8. People I've met at the hospital when a continuous glucose monitor fitted.
9. People I've met at the hospital when chatting in the waiting room.
10. People I've met on an exercise programme run by the hospital trust.
11. Someone I met on a personal development course, who exercises a lot.
12. The uncle of someone I met on the same personal development course, who has great success with cinnamon.
13. A social acquaintance - eats loads of carbs, big tummy.

I haven't actually come across that many people with type 2. It could be because most of my friends and family are fairly healthy and not overweight.

There has been a rise in the numbers of people with type 1 in the western world. From my research, I think the causes could be a virus, which particularly affects people with less strong immune systems, a bacteria in milk, especially when fed to babies from 3 months in formula (as I was), vaccinations, penicillin and similar antibiotics that attack the beta cells in the pancreas (see a paper by Dr Lisa Ladymore in Australia) or, rarely, genetics - that is statistically low, even for siblings. With my third cousins, the girl had various health problems from a young age and got type 1. Her brother visited her in hospital and got type 1 shortly afterwards.

Anyway, it does help to talk to people with it, to get tips on the day-to-day management, either in person or on-line.
 
Health Champion said:
I haven't actually come across that many people with type 2. It could be because most of my friends and family are fairly healthy and not overweight.
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Not everyone who is a Type 2 is overweight or unhealthy!
 
oh lordy!! I don't think the poster above meant to imply that ALL type 2 diabetics are over weight?! Some are though, as are some type 1's and (shock, horror!) some non diabetics :mrgreen: Perhaps the posters family and friends are all fit and sprightly and perhaps that has helped them stay clear of type 2?! Who can tell.................but it doesn't mean that anyone thinks that everyone who has the misfortune of being diagnosed with type 2 has a weight problem. Can we please not make this post into a big 1 vs 2 debacle?!
 
ebony321 said:
Theres about 61 million people in the UK, and about 2 million people with T1 diabetes (whcih i've just googled so may or not be accurate.
Click to expand...
I'm currently researching just this very thing to write my dissertation (am doing a masters late in life, still not sure that's a good idea but anyway...) and I think that 2 million figure is ALL diabetics.
In the UK there are currently 260,000 people with Type 1 and over 2 million with Type 2 diabetes - (ref: Diabetes UK (2010) Diabetes in the UK 2010 London: Diabetes UK).
So basically it's roughly 90% of all diabetics are Type 2, 10% are Type 1. (But of course there are also people with MODY and gestational diabetes etc).
And it is on the increase, not only Type 2s but Type 1s as well. Nobody knows why, but Type 1 is increasing at a rate of 3% a year (ref: Watkins, P. J., et al. (2003). Diabetes and its management, 6th edition. Oxford: Blackwell Publishing).
Are you all impressed with my careful referencing? :wink:

Personally, I had only met a couple of other Type 1s till I started doing my Masters (I'm studying Type 1s). Now I've met lots, which has done me a lot of good and made me feel less abnormal. Those of you who have lots of Type 1 contacts/friends, you're lucky... most of the people in my study say they hardly ever meet another Type 1.
 
hi maryrachel,
I'm doing a general Masters of Research, where you can choose whatever you want to study. If I get through it I have funding to go on and expand it into a PhD.
The topic is continuity of care in chronic disease, which sounds a bit dull but is fascinating. So at the moment I am doing research with Type 1s trying to find out why some of us attend our clinic appointments while some of us do not. Lots of people have said that they rarely meet other type 1s and would value the chance to get advice from people who actually have the condition as well as from doctors. (I am upfront about the fact that I have type 1 as well.)
I have to write the dissertation by end of Aug. 3,000 words done, 12,000 to go! wish me luck.
 
Snodger,

I would be interested to know your conclusion on your dissertation. When I was first diagnosed I would miss the occasional appointment and find every excuse possible to justify not attending clinic, but looking back I was choosing not to except my condition and live life as I did before diagnosis. Thankfully this period of denial was short lived, and the last 25 years I have not missed a clinic appointment.

Good luck with your Masters!

Nigel
 
Noblehead/Nigel,

that's very interesting. It's a theme that is coming up again and again in my interviews. I'm coming to the conclusion that having a period of 'denial' is actually so common to people's experiences of Type 1 that you could almost call it part of the normal progression of the disease. I think it's particularly true of those who have to go through their late teens with type 1 and have to work out how to live with the disease as well as trying to be a 'normal' teenager/young adult. Does that fit with your experience? How old were you when you were diagnosed?

Another major finding so far is that a huge number of the so-called "Did Not Attend" appointments turn out to be a fault of clinic admin rather than the patient. Eg, the patient cancels but the info is not passed on, or the patient just can't get through on the cancellation line (I've tried ringing the clinic cancellation line and you basically get a robot saying 'you are ...17th... in the queue').

The third big finding is that many people are just not getting value from clinic - either because they aren't getting enough practical info and they wish they could speak to other diabetics - and/or because of docs/nurses who are very judgemental about "poor control". Several people have said that they don't go when their sugars are high because they will just be told off. In other words, some docs are not offering helpful info...just saying 'your control is bad' without offering any support or help on how to change. I've noticed similar themes on here too.

Sorry, I seem to have hijacked this thread! Perhaps we should move it to a thread of its own if people are interested? Not sure how to do that though.
 
Snodger said:
The third big finding is that many people are just not getting value from clinic - either because they aren't getting enough practical info and they wish they could speak to other diabetics - and/or because of docs/nurses who are very judgemental about "poor control". Several people have said that they don't go when their sugars are high because they will just be told off. In other words, some docs are not offering helpful info...just saying 'your control is bad' without offering any support or help on how to change. I've noticed similar themes on here too. I[color=#0000FF] agree with this one! I'm not guilty of not attending for fear of being told off but I STILL feel guilty if I am presenting less than perfect BG results and now I have a pump there is no escape as they can see everything on a computer screen!! It is daft that after 25 years I feel bad but it is a fact. I am lucky, I have a good team at my pump clinic but previous clinics have not done a lot for my self esteem as you see a different nurse or doc each time and none of them seem to know what's going on with 'me' as a patient. But then why would they, I am just one person in a sea of diabetics!! [/color]
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