Monogenic (MODY, MIDD, neonatal etc) subforum

[sc2987]

I can see subforums for Type 1, 1.5, 2, 3c, prediabetes, gestational diabetes, and reactive hypoglycaemia.

However isn't there one for monogenic diabetes? E.g. neonatal, MODY, MIDD, etc.

The rules say "2. When starting a new thread, please try to select the most appropriate sub-forum. If your thread is considered to be in the wrong sub-forum it may be moved, by a Moderator." but my post will always be in the wrong subforum if it's about monogenic diabetes if there isn't one.

 

[sc2987]

Also when I registered, MIDD and neonatal weren't in the list of options of diabetes types to select from for your profile (though MODY was), and nor was unknown/undiagnosed.

 

[sc2987]

And re prevalence and few people being registered as MODY on the forum (I've just been looking at old threads about it), that's kind of a self-fulfilling prophecy. There's no harm in having a subforum that's mostly empty to start with, and at least when people with monogenic diabetes come across it, they will see there is somewhere appropriate for them to post, and might actually bother registering.

It's estimated 2-5% of diabetes cases have a monogenic cause (though 80-90% of them will be misdiagnosed as type 1 or 2, so there will be more on here than it seems), and it could actually be even more, as there is still much unknown. Having a subforum could even result in some of those people (and their families) getting the correct diagnosis (which helps both in terms of diabetes management, and also as there may be other health issues caused by their condition), by raising awareness.

The Gestational Diabetes subforum hasn't even been posted in for over a year, and that was a reply, not a new post (the last new post appears to be almost two years old). I can personally guarantee a Monogenic subforum would be busier than that!

 

[lovinglife]

Hi @sc2987 & welcome to the forum

This is something that will need to be answered by admin & is out of the moderator team remit.

You can contact the admin team by using either of the email addresses below to voice your concerns & suggestions, hope that helps

[email protected] or [email protected].

 

[sc2987]

Well I filled in the survey saying basically the above, so I won't contact them separately as well.

But I always prefer questions like this being answered publicly anyway. It's not something private that only affects me, and I think transparency and other people being able to have input (some of them have already said it in the past) are important (though maybe I should have used a different thread title to attract the relevant people's attention! I will change it).

Aren't the admins on the forum too though? Whoever's responsibility it is should surely be able to see and reply to the post. I admin a lot of Facebook groups on my own, so there's no distinction between mod and admin to me, but I assume you are implying that you oversee the daily posts, and they make the decisions but don't post on here themselves? I did read the relevant intro posts, but they don't specify that admins don't engage on the forum.

 

[lovinglife]

Well I filled in the survey saying basically the above, so I won't contact them separately as well.

But I always prefer questions like this being answered publicly anyway. It's not something private that only affects me, and I think transparency and other people being able to have input (some of them have already said it in the past) are important (though maybe I should have used a different thread title to specifically attract the relevant people's attention!).

As pointed out you will need to contact admin via the email addresses provided. The mod team are volunteers & this is out of our remit.

Your request to admin won’t be answered here publicly, we point you to this from the forum rules & ethos you will have agreed to when joining the forum

D. And finally...

1. You are welcome to publicly suggest ways we can improve the forum in the General Chat forum.

2. Any complaints or queries about the forum must be directed via email to [email protected]- any threads or posts of such a nature are subject to be closed and/or deleted without warning or explanation.

 

[sc2987]

I've read both those posts (Community Ethos and Contacting Admin). They say what mods do (but not admins) and give some ways to contact people, but neither of them specify that admins refuse to answer posts in the forum. So I couldn't agree to something it doesn't say.

I am autistic, and often get punished for that in forums (either via sanctions, or social exclusion), because of differences in interpretation when something is vague, and because I seek clarification on that, and because I am direct (which NT people often interpret as rudeness).

I posted this in the Questions subforum, because I was questioning if there was a Monogenic subforum (maybe I just missed it). If there isn't one, then that question is answered (I had come to that conclusion anyway since I first asked), and the thread can be moved to General Chat if that's more appropriate.

But there was also the implied question of "Where am I supposed to post, if I'm not allowed to post in the wrong subforum [I wouldn't want to anyway], and there isn't a right one?". Which I still don't have an answer to.

I don't understand how you make suggestions for improvements without having queries about the forum at the same time (you need to know how something works in order to suggest how to improve it), or without people who have decision-making power responding to it, so the below seems confusing/contradictory. I just want to know whether there is going to be a Monogenic subforum, so I can give up on this forum and start a Facebook group instead if not.

"D. And finally...

1. You are welcome to publicly suggest ways we can improve the forum in the General Chat forum.

2. Any complaints or queries about the forum must be directed via email to [email protected]- any threads or posts of such a nature are subject to be closed and/or deleted without warning or explanation."

 

[Antje77]

I just want to know whether there is going to be a Monogenic subforum, so I can give up on this forum and start a Facebook group instead if not.

Hi @sc2987 , while there is no MODY section currently, the search bar on the top right is very useful if you want to find threads and posts on specific subjects, like MODY.

The rules say "2. When starting a new thread, please try to select the most appropriate sub-forum. If your thread is considered to be in the wrong sub-forum it may be moved, by a Moderator." but my post will always be in the wrong subforum if it's about monogenic diabetes if there isn't one.

There are lots of appropriate subforums, many of the subforums do not specify the type of diabetes it's meant for, they are for all types.

 

[Pipp]

Hello @sc2987 , and welcome to the forums.

Truly welcome.
Simple answer to your questions
There isn’t a monogenic subforum , but you could email admin as suggested by the moderator to suggest they start one. I hope you will and that the suggestion is acted upon.

Your implied question about where to post to?
I would just post in the Ask a Question sub forum for anything that I was unsure of.

Ask A Question

If you have a question relating to your diabetes, managing your diabetes or anything else that is diabetes related, ask the Diabetes Community here.

www.diabetes.co.uk

Hope this helps

 

[Jaylee]

Also when I registered, MIDD and neonatal weren't in the list of options of diabetes types to select from for your profile (though MODY was), and nor was unknown/undiagnosed.

Hi @sc2987 ,

Welcome to the forum.

You are always welcome to put “MIDD & Neonatal” in your signature banner.
Which will always show below your posts regarding the information on you diabetes status you wish to convey..

Best wishes.

 

[sc2987]

Hi @sc2987 , while there is no MODY section currently, the search bar on the top right is very useful if you want to find threads and posts on specific subjects, like MODY.

There are lots of appropriate subforums, many of the subforums do not specify the type of diabetes it's meant for, they are for all types.

Yes I know I can search, but it's not the same as going to a subforum that is specifically for that topic, and seeing all relevant (or at least more relevant than the other subforums) posts in there. Or being able to follow a specific subforum (subscribing to notifications for new posts in there), and ignoring all the others. Plus the search results are formatted completely differently than the list of posts you browse in a subforum, so it's harder to find what you are looking for.

Otherwise there might as well be no subforums at all, and everyone would have to search for e.g. type 1-specific posts. But everyone sees the value of organising posts into the subforums that already exist, because they use them. I would use a monogenic subforum, and eventually so would other people (even if it was slow to start with).

It's not just MODY specifically I am talking about, but all monogenic forms of diabetes. Because although the phenotypes are not the same, the root causes are similar, and the phenotypes within each condition and even within each family are so variable anyway (so at least they have that variability in common!). And it makes sense to group those rarer forms into one forum.

 

[sc2987]

Hello @sc2987 , and welcome to the forums.

Truly welcome.
Simple answer to your questions
There isn’t a monogenic subforum , but you could email admin as suggested by the moderator to suggest they start one. I hope you will and that the suggestion is acted upon.

Your implied question about where to post to?
I would just post in the Ask a Question sub forum for anything that I was unsure of.

Ask A Question

If you have a question relating to your diabetes, managing your diabetes or anything else that is diabetes related, ask the Diabetes Community here.

www.diabetes.co.uk

Hope this helps

Well I filled in the survey there was a link to at the top of the page, and said all this. So I assume it will be considered as a suggestion that way, and I won't have to email separately as well.

I would just like a home, to go through this process (and to support others doing so in future). It's obvious I'm diabetic of some kind, and I suspect it's MIDD, but it could be a long process even getting diagnosed, because of the testing that may be required. I don't want my posts scattered all over the forum in random places; I would like to be able to post in the right place, from the start.

And it's not that I don't have any connection with other forms of diabetes. My dad is type 1. And my mum is diagnosed as type 2 (though I think that she may actually have MIDD). But those subforums aren't relevant to me at this point.
And even if I'm wrong about me personally having MIDD, I'm not wrong that plenty of other people do. And that most of them are misdiagnosed, and may need help finding that out. 5% of this forum's members is 18,528 people who don't have a subforum to post in about their type (and potentially don't even know it exists!).

 

[Lakeslover]

Thank you for sharing your thoughts with us, and we understand your need to understand whether a new forum is likely to be approved.

Unfortunately the only team that can answer your question are admin, and they can only do that if you message them on the address we have provided.

 

[sc2987]

Hi @sc2987 ,

Welcome to the forum.

You are always welcome to put “MIDD & Neonatal” in your signature banner.
Which will always show below your posts regarding the information on you diabetes status you wish to convey..

Best wishes.

I might do that, but it would still be nice to have more the appropriate options built in, so it displays in the right place, like everyone else's does. E.g. MODY (which is already on the list), MIDD, Neonatal, and Other Monogenic might be a decent selection.

I don't know yet anyway; I'm just starting the process of getting diagnosed. I just suspect it's MIDD, from the family history that is suggestive of it.

 

[sc2987]

Thank you for sharing your thoughts with us, and we understand your need to understand whether a new forum is likely to be approved.

Unfortunately the only team that can answer your question are admin, and they can only do that if you message them on the address we have provided.

I'm not expecting mods specifically to keep responding to me. Anyone can give their opinion on the suggestion.

As I said, I've filled in the survey and said all this. So presumably the admins will see it that way.

 

[Jaylee]

Well I filled in the survey there was a link to at the top of the page, and said all this. So I assume it will be considered as a suggestion that way, and I won't have to email separately as well.

I would just like a home, to go through this process (and to support others doing so in future). It's obvious I'm diabetic of some kind, and I suspect it's MIDD, but it could be a long process even getting diagnosed, because of the testing that may be required. I don't want my posts scattered all over the forum in random places; I would like to be able to post in the right place, from the start.

And it's not that I don't have any connection with other forms of diabetes. My dad is type 1. And my mum is diagnosed as type 2 (though I think that she may actually have MIDD). But those subforums aren't relevant to me at this point.
And even if I'm wrong about me personally having MIDD, I'm not wrong that plenty of other people do. And that most of them are misdiagnosed, and may need help finding that out. 5% of this forum's members is 18,528 people who don't have a subforum to post in about their type (and potentially don't even know it exists!).

Hi again,

It sounds like you’ve had no official form of MIDD diagnosis.

I would like to point out rule A11.
“Important: Members are generally not Health Care Professionals, and those who are participate on the Forum as Members, not Health Care Professionals. Members are unable to diagnose any condition, or instruct in the alteration of medication, irrespective of personal or professional standing or experience.”

Found here.

Thread 'Community Ethos & Forum Rules'

Dec 21, 2013

Welcome to the Diabetes.co.uk Forum - the world's largest diabetes community. This is a compassionate, inclusive environment and below are the Forum Ethos and Rules. Please take a few minutes to have a read!

Forum Mission Statement/Objective

The Diabetes Forum helps people improve their understanding and management of diabetes - regardless of type. By connecting people and engaging with each other, people's' health outcomes get better.

A. General Forum Information

1. The Diabetes Forum is our Member interaction area, where questions are asked and exchanges of views...

• Giverny
• community compassion diabetes ethos forum rules tolerance
• Replies: 0
• Forum: Greetings and Introductions

• 
• 
• 

Which also includes your potential thoughts on your mum’s T2 diagnosis.

 

[sc2987]

Hi again,

It sounds like you’ve had no official form of MIDD diagnosis.

I would like to point out rule A11.
“Important: Members are generally not Health Care Professionals, and those who are participate on the Forum as Members, not Health Care Professionals. Members are unable to diagnose any condition, or instruct in the alteration of medication, irrespective of personal or professional standing or experience.”

Found here.

Thread 'Community Ethos & Forum Rules'

Dec 21, 2013

Welcome to the Diabetes.co.uk Forum - the world's largest diabetes community. This is a compassionate, inclusive environment and below are the Forum Ethos and Rules. Please take a few minutes to have a read!

Forum Mission Statement/Objective

The Diabetes Forum helps people improve their understanding and management of diabetes - regardless of type. By connecting people and engaging with each other, people's' health outcomes get better.

A. General Forum Information

1. The Diabetes Forum is our Member interaction area, where questions are asked and exchanges of views...

• Giverny
• community compassion diabetes ethos forum rules tolerance
• Replies: 0
• Forum: Greetings and Introductions

• 
• 
• 

Which also includes your potential thoughts on your mum’s T2 diagnosis.

I don't understand the relevance of that rule.

It doesn't just sound like I have no diagnosis; I've said it explicitly. Me saying I think I (or my mum) might have MIDD is not diagnosing anything. I don't have the power to do that, and I didn't claim to. I am expressing my opinion as a layperson.

Are you saying nobody is allowed to post here until they have an official diagnosis, because expressing suspicion of X type of diabetes (or even having diabetes at all) counts as them diagnosing it?

And that once they have an official diagnosis, they are not allowed to question whether it's correct or not? Many people are affected by misdiagnosis, and there are many posts about it already on the forum.

I understood that rule to mean "Don't tell another member they have diabetes, even if you are a doctor in real life". Or "Don't ask another member to confirm you are diabetic, even if they are a doctor in real life". Or "If you do ask another member for medical advice, don't rely on it even if they are a doctor in real life". None of which I have done.

 

[Jaylee]

I don't understand the relevance of that rule.

It doesn't just sound like I have no diagnosis; I've said it explicitly. Me saying I think I (or my mum) might have MIDD is not diagnosing anything. I don't have the power to do that, and I didn't claim to. I am expressing my opinion as a layperson.

Are you saying nobody is allowed to post here until they have an official diagnosis, because expressing suspicion of X type of diabetes (or even having diabetes at all) counts as them diagnosing it?

And that once they have an official diagnosis, they are not allowed to question whether it's correct or not? Many people are affected by misdiagnosis, and there are many posts about it already on the forum.

I understood that rule to mean "Don't tell another member they have diabetes, even if you are a doctor in real life". Or "Don't ask another member to confirm you are diabetic, even if they are a doctor in real life". Neither of which I have done.

Am I correct in thinking you don’t (do not.) have an official diagnosis of MIDD? (To date.)

 

[sc2987]

No I don't; I've said so multiple times (and it's in my signature now, like you suggested earlier).

I'm clearly not welcome here.

 

[lovinglife]

You are very welcome here, no one has said that but like every member you have to stay within the rules & ethos of the forum.

Please read what I’ve added below carefully, especially the part about contacting the relevant team to answer your question


Like @Lakeslover has said @sc2987 the only way this will get to the correct team is to email directly. We cannot reiterate that advice enough. Please use the email facility to contact the team responsible for your specific question. We cannot help you further with this as you’ve had the definitive direction several times.

In light of this we are now locking this thread to further replies under rule C13 Any threads containing suggestions that are unreasonable or impossible to implement will be locked.