Mody type 10

[Rexi99]

Hi, I’m Rexi and I’m from Germany. Over 30 years ago, I was diagnosed with Type 1 diabetes. I spent a year without insulin and have been taking insulin since then, but only very, very few units. Since my C-peptide level is still quite high and I have no antibodies, a genetic test for MODY was done. It turns out I have MODY Type 10 (INS), which seems to be a very rare form of MODY. Is anyone else here with Type 10?

[Gambit62]

Hi Rexi - I don't actually have diabetes but there is a MODY variant that has run in my mothers side of the family. I was involved in tests around the identity of the particular genetic variant about 20 years ago and was very relieved to find out that I don't have the gene. My brother did inherit the gene and developed diabetes in his 40s - my niece has been tested and now knows that she doesn't have the gene. I don't think it is MODY10, as it seems to be a variant that is much more obvious.

I have done a few MOOCs around MODY and genetics generally which covered the various networks that exist for rare genetic disorders and genetic counselling. You might find this link to ORPHAnets page on MODY useful.

orpha.net/en/disease/detail...

There is a section on support a little way down and links to patient support groups. It links to a search function that doesn't appear to include MODY 10 but there are some versions options that mention the genetic variants so if you know that it may be that there is an option - if not you could try contact one of the more general groups.

It may also be worth trying to find a genetic counsellor who may be much more familiar with using the resources than I am.

I really hope you manage to find a support group.

[Rexi99 in reply to Gambit62]

Thank you very much for the information. I will check it. Hope to find some MODY 10 😉