Does anyone know of doctors or researchers who are interested in treating the possible wider effects of gene mutations that cause mody? Someone who would look at potential issues other than only diabetes? Emma, now age 18, was diagnosed with mody 3 about 3 years ago, after initial diagnosis of type 1. While she is doing okay with diabetes management, we have read that there are other issues that can be associated with this particular gene mutation and are at a loss to find someone who understands what else should be monitored other than diabetes. Any suggestions are sincerely appreciated.
Have you checked in with the University of Chicago monogenic registry? They may be able to direct you to someone local to you. monogenicdiabetes.uchicago.edu