Hi sofaraway,
Yes my son has cysts on his kidneys, nerve damage, eye problems digestive problems and has had a mini stroke. The Doctors all agree that all these conditions are due to the severity of Mody 5.
Since being diagnosed 5 years ago, his condition has got considerable worse to the extent that his wife is now his full time carer.
This is why we are all trying to find anyone with this type of Mody, No other family member has this condition.
Do they think your son was the where the original mutation occurred? I know form speaking to the lab guy from Exeter that they have only found a couple in the 100's of different MODY families they have. Has the other family members been tested?
Yes, the family have all been tested - apart from my sons daughter who is being tested when she is 18 this year. I emailed Exeter and they said they were only testing MODY 1,2 and 3 at this time.
My son has again been taken into hospital this time with a supected stroke. The Doctors all say these symptoms are all sue to MODY 5.