Type 1.5: MODY Diabetes

MODY Diabetes, or Maturity Onset of Diabetes in the Young, is a rarely-diagnosed form of diabetes, accounting for less than 5% of the existing diabetes cases in the world. The disease can strike at any age, though 2/3 of all known cases were diagnosed in older adolescence through early adulthood.

Because initial symptoms are mild, and because diagnostic testing is costly, MODY often goes undiagnosed or is misdiagnosed as Type 1 or Type 2 diabetes.  The disease first presents as a mildly elevated blood glucose level without any clinical symptoms of Type 1 such as ketones or antibodies. For this reason, those who have MODY are often told by doctors they are developing Type 2 despite the absence of risk factors such as obesity and/or old age. And while Type 2 can develop into Type 1 over time, in the MODY patient the onset of insulin dependency or Type 1 generally occurs by age 50, again without risk factors.

The only way to diagnose MODY diabetes is through genetic testing, as MODY is a monogenic disease, which means a single recessive gene from ONE parent is inherited (thereby undermining everything you learned about genetic inheritance in high school biology). While the gene mutation is most often hereditary, presenting in successive generations, in rare cases, the gene can mutate spontaneously in childhood or adulthood.

The latest research on MODY diabetes supports combining the use of oral medications (the treatment for Type 2) AND low doses of insulin (the treatment for Type 1). The combination is NOT suitable for Type 1 patients, however. Since the treatments for the three different types do vary, if a patient presents with diabetes, but lacks tell-tale symptoms of Types 1 or 2, genetic testing should be performed to ensure the most effective disease management plan.

The University of Chicago Kovlar Diabetes Center recommends genetic testing to diagnose MODY diabetes in the following situations:

  • Diagnosis of Type 1 without the presence of any of the antibodies often associated with T1D
  • Diagnosis of Type 1 followed by an extended honeymoon period of a year or more in which the body continues to produce small amounts of insulin
  • Diagnosis of Type 2 in a patient without any risk factors such as advanced age, obesity, or sedentary life style
  • Diagnosis of any kind of diabetes in three or more successive generations (grandparent, parent, and child–Type 1 often skips generations)
  • Diagnosis of Type 2 based on normal fasting glucose levels but excessively high post-prandial (after meal) levels.
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