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Should You Be Tested for MODY?
August 10, 2011
Diabetes is sometimes misdiagnosed. For example, people are often told they have Type 1 or Type 2, when they actually have MODY, also called maturity-onset diabetes of the young or monogenic diabetes. Might you be one of these people? And should you care?
A company called Athena Diagnostics thinks you might benefit from knowing your real diagnosis. At the American Association of Diabetes Educators conference last week, one of their experts shared some good information with me. So I did some more research on my own.
What is MODY?
Unlike Types 1 and 2, which are caused by multiple genetic and environmental factors, MODY is the result of a defect in a single dominant gene. So you have a 50% chance of passing it to children. Probably, environment and behavior don’t have much to do with it.
Signs Your Diabetes Might Be MODY
A person diagnosed with Type 2 might have MODY if they:
Why Would You Be Tested?
I especially worry about the people with Type 2 who actually have MODY or LADA (latent autoimmune diabetes of adults). Many of them may have been denied insulin that would have saved their lives or made them better. However, people with Type 2 are often being prescribed insulin earlier now, so maybe that isn’t as much of a problem.
Those with MODY misdiagnosed as having Type 1 might be able to switch from insulin to a sulfonylurea in some cases. It would depend on which type of MODY they have, which requires genetic testing to find out.
This genetic testing is what Athena Diagnostics (my chief informants) sell, so you have to take that into account. The whole panel of tests could run you about $3500. Your medical insurance might pay for the tests, but some plans have genetic testing exclusions, meaning they might not pay for the MODY tests. If you can show that the testing would affect your treatment, they might have to cover it.
My own take is that, if your doctors are treating you well, based on your personal symptoms, history, and numbers, you might not need to know if you have MODY. If they are treating you as a diagnosis, according to a generic formula, then you would benefit from finding out. If you are a so-called “thin Type 2,” you might clear up some confusion by testing. And if you are thinking of starting a family, testing would be a very good idea.
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