A massive rant - diabetes.co.uk

[mrspuddleduck]

Firstly sorry sorry sorry to everyone for a huge (and somewhat uncharacteristic) rant. As everyone knows by now I'm type 3C, it very rare and to be quite frank a particularly nasty, hard to control, brittle form of diabetes. There are a few of us in this forum, and there are also quite a few participants that have concerns that they may have type 3C. Recently the forum granted us a sub forum if our own and I was absolutely chuffed to bits! Up til now, I've accessed the type 1and 2 discussions, and you have all been fantastic but I often feel I take a lot but have little to give as my type of diabetes is so different.
Tonight however, diabetes.co.UK posted on Facebook and chose type 3C as its theme. Heading "Is anyone else type 3", then " join in the discussion "type 3C how many are we". Maybe I'm being petty BUT type 3 and 3C are two completely different types of diabetes, and my expectation is that one if the biggest diabetes support organisations/forums should know that!
I just hope as a result that people don't go off 'googling' and scare themselves half to death. The whole point if this forum to me us that we can swap research, information and experience, and support each other.
Sorry again for the rant, I think I need a forum holiday.....

 

[ladybird64]

Not being petty at all - I would contact admin asap and bring this to their attention. Take a breath and grab a cup of something (or a glass of something!) and try and chill. I hope you don't take a holiday over this, you are a respected member and your input on 3C is invaluable.x

 

[Administrator]

Nope, absolutely not petty. Apologies @mrspuddleduck - it's my fault. I usually check the facebook posts for the forum. Today, however, I was in London with meetings and have only just returned (it's been a long day!).

I've just corrected the error on facebook. It shouldn't have happened - please accept my/our apologies. Mistakes happen, but we'll make sure it doesn't happen again.

 

[TorqPenderloin]

I'll be the one to say it.....yea you're being petty. Not only do you have a place to discuss your disease but you now have a specific subsection to discuss your particular type of the disease......and not only that.....but that place made a Facebook post in good faith trying to help you promote a discussion, but made the mistake of leaving out a single letter (whether intentional or not) and you feel entitled to make a "Massive rant" .....that's the DEFINITION of petty.

Get real.

 

[mrspuddleduck]

I'll be the one to say it.....yea you're being petty. Not only do you have a place to discuss your disease but you now have a specific subsection to discuss your particular type of the disease......and not only that.....but that place made a Facebook post in good faith trying to help you promote a discussion, but made the mistake of leaving out a single letter (whether intentional or not) and you feel entitled to make a "Massive rant" .....that's the DEFINITION of petty.

Get real.

I respect your view completely @TorqPenderloin but if you were the person who came out of the doctors, head in a fuzz after being told you were diabetic and it was 3 something... So you Google and find this site alluding to you developing alzheimers (rather than clarifying you have a pancreatic condition) how would you feel???

 

[mrspuddleduck]

Not being petty at all - I would contact admin asap and bring this to their attention. Take a breath and grab a cup of something (or a glass of something!) and try and chill. I hope you don't take a holiday over this, you are a respected member and your input on 3C is invaluable.x

Thank you @ladybird64 , its difficult enough having any type of diabetes, but I do feel that type 3 is a particularly devastating diagnosis and should be treated with sensitivity. Given the nature of type 3, I also think giving misinformation or causing confusion could have particularly awful consequences.

 

[mrspuddleduck]

Nope, absolutely not petty. Apologies @mrspuddleduck - it's my fault. I usually check the facebook posts for the forum. Today, however, I was in London with meetings and have only just returned (it's been a long day!).

I've just corrected the error on facebook. It shouldn't have happened - please accept my/our apologies. Mistakes happen, but we'll make sure it doesn't happen again.

Thanks @Administrator and sorry for the rant. I think I'm more concerned about potential confusion for type 3s than about anything else. You rapid response is appreciated!

 

[ladybird64]

I'll be the one to say it.....yea you're being petty. Not only do you have a place to discuss your disease but you now have a specific subsection to discuss your particular type of the disease......and not only that.....but that place made a Facebook post in good faith trying to help you promote a discussion, but made the mistake of leaving out a single letter (whether intentional or not) and you feel entitled to make a "Massive rant" .....that's the DEFINITION of petty.

Get real.

No - this is the definition of petty. Given that Alzheimers is linked to the issue Mrs P was upset about, I would say her reaction was anything but petty.
petty (ˈpɛtɪ)
Definitions
adjective
-tier or -tiest

1. trivial; trifling; inessential

Thank you @ladybird64 , its difficult enough having any type of diabetes, but I do feel that type 3 is a particularly devastating diagnosis and should be treated with sensitivity. Given the nature of type 3, I also think giving misinformation or causing confusion could have particularly awful consequences.

No problem. Given the links with Alzheimers that have made the news recently, and knowing that people are googling trying to find info, it is absolutely the right thing to do to pick up on it. Your post made it really clear why you were upset but the important parts were ignored, concentrating on the definition of petty. It doesn't matter though, because admin have picked up on it and agreed with you. Glad it's been amended

 

[phoenix]

Can understand the rant but also understand peoples confusion.
Type 3c is only one of 8 subcategories categories that could be labelled type 3.(ie come from the original list Type 111a-h 'Other Types of Diabetes'


http://www.diapedia.org/other-types-of-diabetes-mellitus/4104085115
We have people on here with other types that are in the above list and could be called T3 but usually aren't.
MODY is type 3a, steroid induced diabetes: type3e (and diabetes induced by other drugs too)we've had parents of children with 'other genetic disorders' like diabetes related to Downs or Prada-Willi syndromes. These are type 3h. Alzheimer's doesn't appear anywhere on the list!


For some reason the type 3c category is the only one of the 8 that tends to be used, even then many doctors don't use it. It's still a wide category so people will have a wide variety of 'problems' . I'm fairly well informed and I've just realised that haemochromatosis is also on the type 3c list. That is very different to someone who has had a pancreas removed or yet someone with cystic fibrosis.



The idea that Alzheimer's is type 3 complicates things .It wasn't on this list as you can see but the list dates from 1999 and hasn't been updated.
It was a couple of researchers who used the term originally but more importantly in my opinion : it wouldn't fit in. (it isn't a form of diabetes with a known cause)
I wonder if they actually realised that there were already more defined types than just T1 and T2. (or did they just want headlines and unfortunately the label stuck)

 

[ladybird64]

Well, there's an interesting thing lol. As an aside, I'm the parent of a child with Prader-WillI Syndrome, she is on insulin but I've never heard of 3h. Maybe because she is now 25, as PWS is a relatively modern syndrome, this type of info just wasn't around a few years ago.
While I take your point Phoenix, I can still understand the rationale behind MrsP's post. When something has been life affecting, one would expect the difference to be recognised. Anyway, it has been sorted and that's the main thing.

 

[phoenix]

Ladybird, I doubt you will ever hear 3h associated with it anymore than people talk of MODY as 3a. Only 3c seems to be used (and doesn't really make sense without at least types 3a and 3b being used!)
I think it is a great shame that googling type 3 and the first result is the article on this site about Alzheimer's with a big label T3 diabetes and presumably a tag which enables searches to find it. ( sadly most people won't notice words like proposed and possibility)

 

[Shar67]

Type 3 for Alzheimers has a known cause, it was discovered the brain produces insulin and when it stops doing this person suffered memory problems.
I agree with Mrs P anyone going to their doctor to be told that they are at risk of developing type3c and Google it type 3 Alzheimers is the 1st thing that comes up.
Also yes there is lots of illnesses that are under 3c, most people with pancreas endocrine inefficiency issues are tested for them to rule in or out the most likely cause

 

[desidiabulum]

I must admit I have never seen MODY referred to as type 3a -- could you give a ref Phoenix? (other than that specific website) Thanks.

 

[Sid Bonkers]

Well according to phoenix I am now a T3e as I have steroid induced T2 being diagnosed T2 after taking prednisolone for over 2 years for a respiratory condition that almost killed me, but as far as I'm concerned I have T2 diabetes and I dont really care for more labels, diabetes is bad enough and I have the same symptoms as other T2's have only I know what caused mine.

So why bother with other labels at all, its all diabetes which results in high blood glucose levels and if left uncontrolled can cause serious diabetic complications regardless of type. I can see that there is a difference in treatments ie insulin dependant diabetics and tablet or diet controlled diabetics but we are all diabetics at the end of the day and should all stand together rather than splinter into ever reducing groups.

So thats my rant, and if youve got this far I thank you for reading it.

 

[CarbsRok]

Would it not have been better to just pm admin with your problem rather than a full grown rant on an open forum?

My personal opinion is that there are far to many sub forms, the forum is far to cluttered to even bother wade through 90% of it.

 

[AndBreathe]

Sadly, there is often significant miscommunication at diagnosis, as can be evidenced by so, so, so many who come here in a state of befuddlement at best and/or insulted/hurt or plain indignant on the other end of the spectrum.

 

[Robinredbreast]

If I was known as forgetful or absent minded, would I want to be then classed with some form of dementia, no, I don't think I would like that ?

This is just an example and not belittling anyone or derailing, just thought I would sneak that in..............

 

[mrspuddleduck]

Would it not have been better to just pm admin with your problem rather than a full grown rant on an open forum?

My personal opinion is that there are far to many sub forms, the forum is far to cluttered to even bother wade through 90% of it.

@CarbsRok , I was trying to avoid saying this because I actually think this is one if the best sources of information in the public domain, but this is not the first time something similar has happened and last time I messaged one of the admin team. I didn't get a reply and the (what I would consider) mis/confusing information is site on this site.

 

[mrspuddleduck]

So why bother with other labels at all, its all diabetes which results in high blood glucose levels and if left uncontrolled can cause serious diabetic complications regardless of type. I can see that there is a difference in treatments ie insulin dependant diabetics and tablet or diet controlled diabetics but we are all diabetics at the end of the day and should all stand together rather than splinter into ever reducing groups.

The whole point of starting a sub forum for type 3C was it is a different form of diabetes. We have no alpha cells so no 'safety net', we can't LCHF because of the exocrine problems we have which effect absorbsion if carbs, proteins and fats, we can't carb count due to malabsorption, sometimes our insulin regimes are "odd" compared to most others to name but a few issues. On a personal level as I said in my first post, I access both the type 1 and 2 parts of the forum but often feel I take a lot but have little to give as my situation is so different. Whilst yes it could be argued that there are many different types of diabetes, the reason we started the 3c forum was because there were an increasing number if people wanting to know more about it and if you venture into the few posts there are you will find there are more non/not diagnosed 3c's posting on there than diagnosed ones. Just because there is a specific sub forum doesn't mean it splinters the site, it just means people dip in where they need to and makes finding their specific areas of interest/concern easier.

 

[mrspuddleduck]

I think most of the posts are actually demonstrating the very point I'm trying to make! There are so many sub types of diabetes its incredibly confusing for anyone trying to wade through it. But most of those groupings are not in common use (at the moment). Type 3 and type 3C are however used and ever more accepted as specific types of diabetes in their own right. In fact this site has always had a descriptive page about type 3! Personally I felt starting the new sub forums both in 3C and on reactive hypoglycemia was a positive thing and demonstrated just how progressive this site was. Whilst I acknowledge, welcome and thank those who supported that view, I am sad to say I now regret that decision, and feel there will always be a small but significant resistance to us 'oddities', and what should have been seen as a positive addition to our collective support for each other has actually left me feeling out on a limb. In fact I think it's interesting that today a new post has started about whether thete should there be a separate type 1 forum! Perhaps I'm not the only one who feels we should work together in our common goals whilst respecting and acknowledging our differences???