Article on monogenic diabetes (MODY) in Chicago Sun-Times

Below are some excerpts from a Chicago Sun-Times article entitled "Diabetes expert Dr. Louis Philipson stresses importance of accurate diagnosis"

One of the most astonishing statements that Dr. Philipson makes is that 97% of children with monogenic diabetes have been misdiagnosed as having Type 1 or Type 2 diabetes. (As is so often the case, adults with monogenic diabetes are not discussed.)

Here are some excerpts:

Today, of the roughly 26 million Americans living with diabetes, up to an estimated 250,000 people could have monogenic diabetes. And a recent study of children with diabetes showed that 97 percent of these cases have been misdiagnosed as Type 1 or Type 2 diabetes.

The prevalence and chronic nature of the diabetes make understanding, treating and correctly diagnosing the disease critical. Accurate diagnosis means more effective therapies — which can be life-changing for those with diabetes who find out they have the monogenic form of the disease.

As a diabetes specialist and the director of the University of Chicago Medicine Kovler Diabetes Center, I am fortunate to be part of an era of medical science in which physicians truly can help improve the quality of life among patients with diabetes. And thanks to genetic testing, we can correctly diagnose most forms of monogenic diabetes.

Genetic testing is the only way to check for monogenic diabetes. Testing should be considered for anyone who already has diabetes if the diagnosis was made by age 1, if there is an extended family history of diabetes or if mildly elevated blood sugars are found during routine checkups. There are other symptoms, so please talk to your doctor if you fall into any of these categories.

My hope is that with continued research, patients with all forms of diabetes someday will get the same freedom.

Dr. Phillipson is the lead investigator at the Kovler study called "Monogenic Diabetes Registry." He doesn't mention the study, he may not be allowed to publicly solicit patients. The study is enrolling people right now and a number of us have applied. While Dr. Phillipson suggests that you should ask your doctor about getting tested I have never found a doctor willing to order the test. There is Monogenic Diabetes (aka MODY) group here on diabetes to discuss this topic

Thanks Melitta and Brian!

Really useful information--especially for the newly diagnosed or those who feel that their diagnosis doesn't fit their experience of diabetes.

Best wishes,