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From Pennsylvania, USA:

Out of our three children, two have been diagnosed as MODY (Mature Onset Diabetes in Youth). I have never heard of this and we have never come across anyone else with it. I understand what it is, but am curious if there are any other children that have been diagnosed with this and what kind of support groups would be of help to them. The youngest is now 17 and was diagnosed at 15.


The term MODY or Maturity Onset Diabetes in the Young was first used in the early 1960's to describe a mild form of diabetes that became apparent in the teen or young adult years, which could often be controlled by diet and exercise alone, in which there was usually a striking family history and which seemed to have a predilection for young Hispanic or African Americans who were also somewhat overweight. This group seemed to comprise between 2% and 5% of all cases of NIDDM.

Modern genetic techniques for analysing chromosome sequences, and a realisation that the majority of new onset diabetes in African American and Hispanic children does not show evidence of the typical Type 1 autoimmune disorder, has lent impetus to the search for other causes of diabetes in this age group. The best defined of these is MODY2 in which a mutation on chromosome 7 has led to a defect in the enzyme glucokinase which interferes with the supply of energy necessary for the release of insulin from the beta cell. There are many sub-variants and in the more severe insulin may be required; but for the most part diet and perhaps sulfonylureas are all that is needed and long-term complications are spared. MODY1 and MODY3 are mutations on chromosomes 20 and 12 respectively, both of which affect the production of something called a Hepatocyte Nuclear Factor which in turn affects the ability to release insulin in response to a rise in blood sugar. These variants are significantly more liable to long term complications.Precise diagnosis is still a 'research' procedure and probably not important clinically, although there should be no relaxation of the goal of excellent control.

I know of no support systems that are unique to MODY; but your two might benefit from conventional groups (which tend to be evanescent) or possibly from diabetic camp. Information on both these can be obtained through the American Diabetes Association on other pages of


Original posting 18 Apr 97


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Last Updated: Tuesday April 06, 2010 15:08:54
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