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Genetic diabetes anyone MODY - ABCC8? Looking for others to ask how do you manage it ?

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Namake

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Hi me and my 4 children all have diabetes and We all manage differently - 2 diet low carb - 1 insulin- 1 was insulin now glycacide- 1 metformin and glycacide. None of us manage it that well . I am wondering if anyone is similar managing well? - we are all target weight never been over, most of us very active.

“From Exeter uni after a study on our family - variant in your family is in a gene called ABCC8. I’ve attached an article reporting variants in the ABCC8 gene as a cause of MODY. You have a change called p.Gly1009Ser which changes the amino acid glycine to serine at amino acid position 1009 in the ABCC8 protein. We are not sure if this variant is the cause of the diabetes in your family. We all have millions of genetic changes in our genome and only very small number will be damaging. So this variant could just be a rare variant that is benign and not causing diabetes. The evidence supporting this variant being pathogenic is that you and all of your four children have diabetes that is not typical of type 1 or type 2 diabetes and also have the variant. We have also seen the same variant in a family in India that have diabetes that fits with monogenic diabetes. But we do need more evidence and this is likely to come from additional families being found with this variant or additional members of your family developing diabetes and found to have the variant.
 
Hi! I also have MODY, although a different gene mutation to you. I use a basal/bolus insulin regime. I was offered oral meds but I don't think the control is as good compared to being on insulin - for me personally anyway.
 
Does anyone know if someone with MODY could have negative C-peptide test?
 
Hey Namake,

I have a variant in the ABCC8 gene also. I've been managing / experimenting with low carb / keto and sometimes carnivore diet but have reintroduced a few carbs at times with mixed results. Currently I take Novorapid Insulin in the morning to deal with high morning numbers and sometimes with meals. My daughter has the same genetic variant, but has congenital hyperinsulinism which is a bit like the opposite of diabetes.

I've read as many studies as I can find on ABCC8 related diabetes and it seems that no two people with defects to this particular gene have the same experience.
 
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