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laura.waddell

New diagnosis

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laura.waddell

Hi everyone!

I have been on this site a while ago under a different name. I have been diabetic for just over 2 years now. However they have been unsure of my type, finally after months of waiting my genetic test results are back! Originally it was looking like i had MODY test results have come back and i have a rare genetic form of diabetes called MIDD. Maternally inherited diabetes and deafness. This was a big shock to both myself and my mother, there are a number of complications with this type. Hoping there is someone who might know a bit more about this or who can point me in the right direction?

Many thanks laura xx

 

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rubidoux

Gosh, I have never heard of that. Is it caused by autoimmunity? Do you still make your own insulin? Are you also deaf? Does your mom have it? How are you treating it?

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laura.waddell

My mother is both deaf and diabetic. My younger brother is currently being tested for his hearing. At the moment i am not deaf, but there is a 75% chance i will be. There is also a greater risk of having heart complications, muscle disease, eye problems and gastric problems. I would love to talk to someone who also suffers from this. I used to take metformin two times twice daily but have stopped taking them as they are 'dangerous'. I also take insulin 5 times a day.

 

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Tanikit

Hi - I have also never heard of this type of diabetes - did a google search about it to find out though. Sorry to hear you have it. Is it quite a rare thing? Is there anyway of treating the deafness cause by this (cochlear implants or anything else?) Sorry to hear it runs in your family.

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laura.waddell

Yes it is very rare, only 1% of diabetics suffer from it. I am currently waiting on a hearing test and a heart scan. It is being treated as type 1 so also waiting to hear about attending a dafne course. Would love to talk to someone in the same boat as me!

 

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GrammaBear

Because of the rare type of diabetes you have been diagnosed with, is there any chance you could obtain an insulin pump? It will not help your possibility of deafness, but it may make your diabetes management a lot easier. I realize that pumps are not that easy to obtain in your country, but could your doctor make a recommendation for you? I'm sorry about the deafness possibility. I am also deaf in one ear and a substantial loss in the remaining ear. I have not been tested for the type of diabetes that you have however.

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laura.waddell

I am going to mention an insulin pump to my gp when i see him tomorrow. I have done some research into them and think i would benefit a lot. Maybe you should ask to be tested? My mum is also deaf, however in both ears.

 

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