M.o.d.y ii

Maturity onset diabetes of the young.
I was just wondering if anyone out there has this… I just found out I do and it it is so off the map that treating it is interesting.

here’s a small discussion about mody

Jenny is MODY & her site has MODY info www.bloodsugar101. Definitely a challenge. You have a good doctor to have recognized it.

I have suspected I might be MODY-2, but can’t really get testing in the US. Most MODY forms present with poor glucose tolerance. MODY-2 is impaired fasting glucose. Each form is different and there are different treatments. From what I have read, MODY is actually much more prevalent than thought, perhaps upwards of 20% of the diabetics, and in many cases MODY can be a complicating factor that can bring on “type 2” and beta cell decline. A big problem is that for the most part in the US, MODY is considered an neonatal condition, so if you don’t get diagnosed until you are an adult, you probably will never get diagnosed. The JDRF runs a MODY hotline, but they are incompetent and apparently use it to just solicity donations. The other site in the US is Kovlar diabetes in Chicago, but they never responded to any of my inquiries. The best site for help is the group at Exeter run by Prof Hattersly (http://diabetesgenes.org/), they are the worlds leader in research, have been helpful to a lot of people and have apparently quite reasonable testing costs. There is information on their site suggesting appropriate treatements for various MODY forms.

From what I understand of MODY 2 it is a higher bg set point, so fastings are higher than normal. But there is no insulin resistance involved and with proper diet you won’t need any meds. There is a genetic marker that they test for. It tends to run in families. Most doctors in the US really don’t understand it and many insurance companies won’t pay for the test. There is a separate genetic test for each MODY variation. When I asked my doctor about it, he looked at me like I was crazy.

Wow, I got the same look, right before he told me I was fat and stupid and then ordered some cholesterol tests that weren’t covered by my insurance. Do we have the same doctor?

ps. And you characterized MODY-2 exactly which is why I thought I might have it.