MODY Diabetes

[samjh89]

Hi, i'm sam, a 23 year old student in london, iv'e recently been diagnosed with Mature onset in the young(MODY) diabetes, which seems to be either here nor there , with a slight lack of information (there wasn't even a category for it when signing up, which was helpful, obviously). My doctor, who is great and seems actually genuinely interested, which is brilliant, gave me some information, but it all seems a tad technical, and not great for application on a practical basis.I understand, broadly, how type 1& 2 diabetes work, i was just wondering if anyone with, or experience of MODY diabetes could give me some practical explanation and maybe even account of what to expect and experience with it. I'd be really appreciative to anyone who could help me out and chip in some advice.

With much gratitude,

Sam

 

[phoenix]

Hi,
I know we have at least a one member with MODY. There may very well be others but misdiagnosed not all doctors are very informed about it and probably fewer willing to authorise the genetic testing.

Hopefully you some fellow MOdys to share experiences but even without there will certainly be people on here using similar methods of control.

meanwhile here's a few websites that you could look at (if you havent already found them)
1) This is from a blog written by Jenny Ruhl. She herself has MODY and has written an intro about it. It does contain quite a lot of technical info still though. (Jenny is sometimes controversial member of the 'diabetes community' but that article is very mainstream.(nB her blood glucose measurement figures are in mg/dl you need to divide by 18 to get the mmol/l used in the UK)
http://www.phlaunt.com/diabetes/14047009.php
2) This is an American site, looks as if it has a way to go still, not certain it will add much.
http://www.modyawareness.com/patients-f ... s-mody.php
3) this is the really technical info from Exeter.http://www.diabetesgenes.org/

 

[samjh89]

Thanks for the reply, the forum was helpful!

 

[the_anticarb]

Hiya I'm a MODY! It took me a while to get diagnosed as such though (17 years!) so you're lucky to be diagnosed as mody so soon. Its quite frustrating as it's neither t1 or t2, from what I understand it is a single, dominant faulty gene which means the message to tell the body to produce insulin does not get through. So the pancreas is capable of functioning but doesn't know it is supposed to. It is progressive, unfortunately, so whilst I started off 20 years ago on just metformin, I now need the full shebang of long lasting insulin and rapid insulin (as a t1 would ) plus metformin. I don't think my pancreas is producing much insulin at all on its own now,.

It can be really annoying to be neither t1 or t2 as everything seems geared up to categorise you as one or the other. Decide for yourself which type you identify more with, if you feel a need to belong in a category. A lot of non diabetes specialist HCPs haven't even heard of MODY, or understand what it is, so don't be suprised if you're met with blank stares a lot of the time when you say what you are.

I still get categorised as a type 1 by my GPs and a type 2 'with a suspicion of mody' by the diabetes centre. But I was categorically told I was MODY by another diabetes centre I used to go to when I lived in a different city, so that's what I believe to be true.

Oh and because it's a dominant gene it really runs in families. Although you can be the only one to have it (due to genetic mutation) if one parent has it, you and your siblings each have a 50% chance of inheriting it. And your children will all have 50% chance of inheriting it, although it doesn't usually come on til adolescence/early adulthood.

The diabetes genes site is really good for more info. Have you actually been genetically tested for which type of Mody you have (there are several faulty genes)

 

[samjh89]

My mother has it, her dad did too, so my doctor feels pretty confident it is, im still waiting on my genes testing back from a hospital in southampton though. Unfortunately she's more of the get on with it than learn it in and out type of person, she's had it for 35 years now though, and she's still in good health. My Doc thinks glicliside (im not sure if thats how its spelt or even its actual name) would be the best treatment, its what my mothers takes aswell, im just on meteforim at the moment though. Did any one ever have leg, or muscle in general,cramps or anything of that sort with their diabetes, of any sorts? Also does anyone know if you have to continue paying 7.40 for your prescription every month?

 

[Grazer]

If you're a diabetic on medication, which you are, your prescriptions will be free. Not just for diabetes meds, but for anything.

 

[samjh89]

Thanks for the heads up

 

[Sammydog]

Hi,
I know we have at least a one member with MODY. There may very well be others but misdiagnosed not all doctors are very informed about it and probably fewer willing to authorise the genetic testing.

Hopefully you some fellow MOdys to share experiences but even without there will certainly be people on here using similar methods of control.

meanwhile here's a few websites that you could look at (if you havent already found them)
1) This is from a blog written by Jenny Ruhl. She herself has MODY and has written an intro about it. It does contain quite a lot of technical info still though. (Jenny is sometimes controversial member of the 'diabetes community' but that article is very mainstream.(nB her blood glucose measurement figures are in mg/dl you need to divide by 18 to get the mmol/l used in the UK)
http://www.phlaunt.com/diabetes/14047009.php
2) This is an American site, looks as if it has a way to go still, not certain it will add much.
http://www.modyawareness.com/patients-f ... s-mody.php
3) this is the really technical info from Exeter.http://www.diabetesgenes.org/

Hi I've been MODY since I was 17 am now 52 !! The MODY journey has not been an easy one ., would love updated info as still after all this time it's relatively unknown ..

 

[tlcc77]

Hi, I'm new to this forum but I've been reading diabetes.co.uk for more than a year. I'm writing from outside UK.

I've a question about MODY. Besides genetic testing (which is not available in my country), is there any way to diagnose MODY?

There are three generations of diabetics in my family-my mother, myself and son. Initially, I was diagnosed as T2, then LADA. I'm on the insulin pump. My son was diagnosed as prediabetic when he was seven years old and confirmed T2 when 14 and started on medication. We eat healthily, exercise regularly and have normal BMI.

I'd appreciate any advise on this.

 

[desidiabulum]

Hi, I'm new to this forum but I've been reading diabetes.co.uk for more than a year. I'm writing from outside UK.

I've a question about MODY. Besides genetic testing (which is not available in my country), is there any way to diagnose MODY?

There are three generations of diabetics in my family-my mother, myself and son. Initially, I was diagnosed as T2, then LADA. I'm on the insulin pump. My son was diagnosed as prediabetic when he was seven years old and confirmed T2 when 14 and started on medication. We eat healthily, exercise regularly and have normal BMI.

I'd appreciate any advise on this.

Hi tlcc77 and Sammydog.
You might find this MODY link helpful:
http://www.phlaunt.com/diabetes/14047009.php