How different are we? By Helen May


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The first comment I received from my first blog was exciting – someone is reading me so I am not waffling to a void. Thank you Ben for showing me I am not alone.

Ben’s comments touched on one of my hobby horses: I have been thinking about the difference between Type 1 and Type 2 diabetes. Until I was diagnosed with diabetes, like many, I was not aware of multiple types of diabetes. Now I know there is Type 1, Type 2 and gestational diabetes, amongst others. All these types have the same name and a single charity. Having Type 1, this is the type I know best.

However, when you read the detail in press reports, they are usually about Type 2; most research projects are to understand the causes, cures and management of Type 2 and one of the comments I’ve received when I tell people I have diabetes (“you can’t have diabetes, you’re not fat!”) shows that most people know far more about Type 2.

According to Diabetes UK, there about 2.8 million people in the UK with diabetes. I have read that around 90% of these have Type 2. Therefore, I calculate that there are about 280,000 people in the UK with Type 1. Comparing this with other conditions, I wonder whether Type 1 diabetes should have its own charity? For example, between 6500 and 8000 people in the UK have Huntingdon’s diseases and they have the Huntingdon’s Disease Association (HDA).

There are similarities between Type 1 and Type 2: the symptoms are the same; the medicine is often the same; the lifestyle management is the same; the aim of the treatment to maintain good blood glucose control is the same; the prejudices we may experience are the same; and the long term affects of not managing the diabetes can be the same. So on second thoughts, I think it is correct to have a single charity campaigning and researching on behalf of all of us, regardless of type. Ten percent is a big enough minority that our voices will still be heard. In return, we get a much louder voice from 2.8 million people.

Sorry to get distracted on this topic. Next time I promise to write about some of my fun activities.

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Thank you to everyone for their intersting comments. I’m always intersted to learn more about diabetes and not just about Type 1. So thank you for teaching me more about Type 2 and MODY. I think the comments has shown how we differ but need Diabetes UK to try the unenviable task to represent all of us.
And, Lesley, I will be checking out JDRF.
I hope to publish my next post later this week … I’m planning to write something about how diabetes hasn’t stopped me doing what I want.

My name is Safiya Rickett. I am 10 years old. I have 2 brothers aged 5 & 7.They bowth go for tyquando 3 times a week. I like balle,rock climing,swimming and carate. I live in Saudi Arabia and have diabetes type 1. I am on an insulin pump. When I do my canula I am normally scared because it might hurt. In June when we went on holiday to Britain, the canula realy hurt. At school sometimes people ask me’what is that thing’? I say to them’I’ll tell you later’, because it gets quite annoying.

TTFN (ta ta for now)

Hi – I feel very judged for having Type 2 rather than Type 1 because I am overweight. My mum was also diagnosed a year after me. What you never hear mentioned is Type 2 sometimes being caused by certain medications. I was on a particular antipsychotic medication until diagnosis, when my GP said that probably triggered it, and that she had another patient in the same situation. She got me an emergency psychiatrist’s appointment so I could be put on a different medication as soon as possible. I found this drug is linked to quite a number of diabetes cases, and a surprising number of people with mental health problems are also diabetic. Of course you don’t hear that because the media are too busy spreading the stereotype ‘diabetic=greedy fat person’

I think the problem is that Type II is highlighted as a major side afect of being obese. It’s effectively being used as part of a stick to try and force people to improve their lifestyle. The general population knows nothing about diabetes of any type (I certainly didn’t before I actually got type 1 about 10 years ago) so the only time they hear about it is in connection with the “improve your lifestyle or you’ll get diabetes” message. So it is understandable that when they then meet some one who has it they assume it was a lifestyle problem (in the same way most people would link lung cancer to smoking) they never hear about the genetics or the simple bad luck. But ultimately we need to ask ourselves what would we prefer to spend our money on? Research for treatments and a cure? Campaigning for better treatment by the health authority? Or a massive educational campaign that says “It’s complicated. Diabetes and diabetics come in many shapes, and sizes and although it CAN be a result of poor lifestyle it isn’t always”, it would cost a lot and ultimately the only benefit is that it would save us all having to spend 10 minutes putting people straight every so often. Personally I think it’s worth continuing to tell people to try and improve their lifestyle or they are at risk because then it’s a sharp reminder to the general population they need to do something to look after themselves, whilst the money for the diabetics goes on helping us in practical ways. Until the cash is available for a nationwide education programme I think we will just have to continue with our individual roles of Diabetic propoganda artists…”Yes, there are different types and different causes”, “No I don’t inject into my viens”, “No I didn’t eat too many sweets as a kid”

Type 1 does have it’s own charity – the JDRF. (Juevenile Diabetes Research Foundation). It’s mostly about researching for a cure though. Worth looking at their website & signing up for email updates if you’re a Type 1.

Very well put MartYn. I actually know very few diabetics that are obese. In fact as I sat round a table at a site meeting with seven people, three of us type 2 diabetic, we were the slimmest and fittest there.

Sorry I have to disagree with this part of your post:
“when I tell people I have diabetes (“you can’t have diabetes, you’re not fat!”) shows that most people know far more about Type 2.”
I get this comment a lot as well. BUT to me that shows that people do not know more about type 2, just they ‘think’ they do and they think that to have type 2 you have to be fat which is completely wrong. You can be young and thin and have type 2. To me this shows that both types have misconceptions and people are poorly educated. But can we blame these people for that? No I don’t think we can. People can only form an opinion from the information they are given. If the information is wrong or misleading, then they’ll have no chance of getting it right. I can tell you for a fact, before I was diagnosed type 1 I knew absolutely nothing about Diabetes and I’m not ashamed to admit that. This is why I don’t think we can get annoyed at people for getting it wrong, we just need to help re-educate them and dispell some of the myths and misconceptions there are. But saying that, there are loads and loads and loads of people WITH diabetes that don’t know the differences between type 1 and 2 and all the other types. Some don’t even know there are more type than 1 and 2. Some people with type 1 still think that type 2’s ‘bring it on themselves’ and have a choice that they could have prevented it. This is most definitely not the case with some type 2s, some will get type 2 no matter what their diet is, people forget about the genetic side sometimes. Because of this it really bugs me when people make sweeping statements about type 1s or type 2’s and they forget that each person is different. If people with diabetes can’t get distinctions correct how on earth can we expect people without it to get it right?

But apart from that, good to see different slants on the same topic i.e. mutliple charities etc.

Hi,
I have to agree that there is a lot of ignorance about diabetes even from GP’s and people that have Diabetes.

I am familiar with the question” Have you lost a lot of weight then?” even from nurses. I was asked this befoe an operation when they run through the questionss .. Have you heart probs, diabetes? etc.

Not every one that is type 2 is over weight. My mother was not over weight and was type 2 and died in diabetic coma. My brother was never overwieght and he was diagnosed type 2 in his 50′ s like me and was on oral medication before being put on insulin, arguably ten years too late and then dying in diabetic coma.

I have been type 2 for ten years and am about to go on insulin because oral drugs dont control it anymore. I fear I will end up the same way as my mother and brother if the NHS doesnt improve on this subject.

However having said that I do appreciate that without modern meds my mother and brother would have died earlier and I would be feeling much worse than I do so I mustnt grumble.

I agree with previous comments both about the lack of information given out to newly-diagnosed Type 2 diabetics and the availability of information on the internet. Yes, the information is there, but when, for example, you are like my mother-in-law, who has no computer and no intention of buying or learning how to use one, the availability of information on the internet is null and void.

When I was diagnosed, I felt that I had to learn a lot by myself. I had the advantage of working in the pharma industry, so perhaps had access to more information that the person on the street. Even so, my pet hate is the annual check up. As commented previously, this seems to be a tick box exercise, rather than genuinely aimed at a personalised care plan. On attending a recent ‘education’ course, I was also told that I didn’t need to test my blood (diet controlled, no medication), which did not take into account NICE guidance re people who drive for a living. As I an active sportsperson, I know that hypos can occur after intense activity and are not the sole prerogative of Type 1-diabetics-on-insulin. On asking my GP, he admitted the course was around the lines of the PCT trying to save money, rather than best clincal or NICE guidance.

I am hoping that, with the changes to the NHS in terms of patient-reported outcome measures (PROMs), that there will be more information made available to patients, taking into account things like lack of internet access, and that the information is in the patient’s interest, as well as being cost-effective clinical practice.

Steve, I think you are missing the point here somewhat. By the sound of your response you are more upset at not being treated/seem properly by the right people I’m a short time, most of the carb/food. And other dietary needs can be found online or even through/from Diabetes UK website m8t. There is not a lot of (if any) discrimination between type 1 and 2 diabetics in Leeds nor anywhere else I know of. If you need appointments to see people then constant ringing of said people will soon change their laziness. It worked for me.. So chin up m8t and hope you get to see the relevant people.

My GP retired and I have had to join a large practice spread over three surgeries, with junior/locum doctors who seem to change frequently. There is only one nurse specialising in diabetes care who works from the smallest surgery which is also the furthest away. My annual review is conducted by someone who only ticks the required boxes. So Steve, I can well understand your frustration at the apparent lack of care you are experiencing.

My advice is to use the facilities that Diabetes UK have on offer. The information available covers nearly everything you need to know, with members able to provide the small details that can make a huge difference to your life. We are all individuals, and the majority of us don’t fit into the perfect round holes that the medical profession say we should.

Hi, 4 years ago I was diagnosed with MODY. 4 years on and still people at my GP surgery don’t know what it is! Even some nurses and doctors say “oh so you have type 2 then”, no it’s MODY. I find it a bit concerning that our own healthcare professions don’t know the differance between the types.

Hi there, with regards to your blog how different are we.

I have to disagree with you on the fact that there is more publicity regards type 2 than 1.
I have only been diagnosed a few months with type 2 and so far in 2 and a half months I have seen a nurse for the initial tests and then the same nurse afterwards to tell me what i need to improve on.
Since then nothing! apparently i dont need to test my blood sugars at all, I only need to see a nurse once every 12 months (not even seen a doctor yet)
8 month waiting list to see a dietician! 3 month waiting list to see the retina scan thing.
So therefore I am under the opinion so far rightly or wrongly if you have type 2 dont panic, dont change your life because its not serious.
Sorry for the rant but i have struggled to find out about carbs and all the other technical jargon that goes with it.

Hi Helen,

This article was a good read, and I totally agree people know so much about type 2, and hardly anything about type 1. I am fed up of comments like, did you eat too many sweets as a child or similar to your comment ‘but your not fat?!?’.

I have written to my local MP and asked for them to increase funding to help increase the awareness around type 1 diabetes.

Rebecca