Hello i have been diabetic for 10years now, when i first got diagnosed they ran alot of test and they all came back negative so they always just said i was type 1 diabetic! Now after 10year they have ran dna again and found out i have maternally inherited diabetes and deafness! Am finding it a lot to take in atm as am still waiting on appointments coming in to see specialist, i have been trying to look it up but it a bit confusing as i fit some of the things they say but not other! I was wondering if anyone on here could help me out or if anyone has this.
maternally inherited diabetes and deafness
- Thread starter xkerrybabessx
- Start Date
Squire Fulwood
Expert
- Messages
- 6,107
- Type of diabetes
- Type 2
- Treatment type
- Diet only
azure
Expert
- Messages
- 9,780
- Type of diabetes
- Type 1
- Treatment type
- Pump
Bumping this for you. I also found this thread:
http://www.diabetes.co.uk/forum/threads/genetic-diabetes-midd.103016/#post-1182282
.
http://www.diabetes.co.uk/forum/threads/genetic-diabetes-midd.103016/#post-1182282
.
Hi xkerrybabessx I have been Type 1 diabetic for almost 7 years and I was told 2 weeks ago that I have MIDD... Like you I am finding it all hard to take in and there is hardly any information out therethat I can find. I have a almost 2 year old daughter and was thinking about having another baby but now I don't know if I should because of this new diagnosis.
Dark Horse
Well-Known Member
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- 1,840
This page has a MIDD information sheet you can download:- http://www.diabetesgenes.org/content/maternally-inherited-diabetes-and-deafness-midd
There is some more information here:- https://www.diapedia.org/other-types-of-diabetes-mellitus/41040851356/mitochondrial-diabetes
Hi,
I have just recently been diagnosed with MIDD myself, after my mother who was diagnosed as type 2 for over 30 yrs has just found out she is MIDD due to my cousin also being recently diagnosed with MIDD.
My cousin has been referred to Great Ormond St where they have some really great specialists. I attended a seminar with her recently around Mitochondrial Disease, which causes MIDD. Still very new to it all myself as my Dr’s are unsure what to do for my diagnosis and are treating me as T2, pending a consultation with a specialist consultant.
The specialists at Great Ormond have put together some good bits of info on the NHS website under Mitochondrial Disease, they have a professional section which covers MIDD under its ‘care guidelines’.
Hope that helps somewhat but everything is quite vague at the moment as very rare and not well know about.
I have just recently been diagnosed with MIDD myself, after my mother who was diagnosed as type 2 for over 30 yrs has just found out she is MIDD due to my cousin also being recently diagnosed with MIDD.
My cousin has been referred to Great Ormond St where they have some really great specialists. I attended a seminar with her recently around Mitochondrial Disease, which causes MIDD. Still very new to it all myself as my Dr’s are unsure what to do for my diagnosis and are treating me as T2, pending a consultation with a specialist consultant.
The specialists at Great Ormond have put together some good bits of info on the NHS website under Mitochondrial Disease, they have a professional section which covers MIDD under its ‘care guidelines’.
Hope that helps somewhat but everything is quite vague at the moment as very rare and not well know about.
Hello everyone i have just seen these messages! Ano its scary because my mum has always been type 2 and i got my diagnosis after my mum passed away so we dont know if she had it along! I am going to see dna specialist in December so hopefully will get some answers! I dont have any kid yet would love too but this is putting me off as i will pass it on to my kids! Xx
Just waiting for the results of testing for MIDD - Mum and all her siblings had/have diabetes and some level of deafness. I've read everything I can lay my hands on about this (I have access to a University library). It is a very new area but there are recognised approaches to treatment. The more of us they identify the better it will be to get more people aware of this.
Sorry, I can't find the link, but I recall a video of a retired ear doctor who discovered (and put himself out of work due to it) that a lot carb diet often improves the deafness. (He saw a lot of cases of deafness he linked to MIDD in people who had not yet been diagnosed as having diabetes.)
My mother was treated for T2 for many years and passed away in 1995. I have since been diagnosed with T2 but have never seen a specialist, only my GP and DN. How would I go about getting tested to find out if my diabetes is maternally inherited? My biggest concern is for my daughter as, if she's going to develop this, I'd like her to learn how to manage it before it becomes a bigger problem than it needs to be!
I'm now 57 and my daughter is 21.
ETA: As far as I am aware there is no accompanying hearing loss so this may be a red herring for me.
I'm now 57 and my daughter is 21.
ETA: As far as I am aware there is no accompanying hearing loss so this may be a red herring for me.
Smallbrit
Well-Known Member
- Messages
- 284
- Type of diabetes
- Type 2
- Treatment type
- Diet only
I know is an older thread, but just to say this is very interesting.
My mum was an "older mum" for then, diagnosed type 1 in early adulthood and went deaf as an adult, completely deaf (various operations happened) by the time she had me at age 44. All medical opinion at the time warned her against being ancient (for then), deaf, diabetic and having a child.
I am almost her age now. I am now profoundly deaf (early adulthood onset gradually getting worse), had severe gestational diabetes, was diagnosed prediabetic when I came back to UK from US 3 years ago (15 years in the US and had no follow up after gestational diabetes...!) and this year HBAC1 skyrocketed. It's been assumed I'm type 2, but dr has ordered some extra blood tests in Feb, which I'd assumed were re: type 2/type1 but he did mention the words "gene" in there, so now I'm wondering if that's what he's ordered.
My mum was an "older mum" for then, diagnosed type 1 in early adulthood and went deaf as an adult, completely deaf (various operations happened) by the time she had me at age 44. All medical opinion at the time warned her against being ancient (for then), deaf, diabetic and having a child.
I am almost her age now. I am now profoundly deaf (early adulthood onset gradually getting worse), had severe gestational diabetes, was diagnosed prediabetic when I came back to UK from US 3 years ago (15 years in the US and had no follow up after gestational diabetes...!) and this year HBAC1 skyrocketed. It's been assumed I'm type 2, but dr has ordered some extra blood tests in Feb, which I'd assumed were re: type 2/type1 but he did mention the words "gene" in there, so now I'm wondering if that's what he's ordered.
If you have this condition you shouldn't be on metformin as it dangerous for us with this condition i was taken straight off mines when they found out i had the condition.
