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Frequently Asked Questions About Neonatal Diabetes

What is neonatal diabetes?

Neonatal diabetes can be permanent (permanent neonatal diabetes mellitus, PNDM) or transient (transient neonatal diabetes mellitus, TNDM). In PNDM, the diabetes requires treatment for the person’s entire life. In TNDM, the diabetes may go away and no longer require treatment after the first few months of life. However, the diabetes will often return later in life.  It is very important to have genetic testing done to help guide treatment, prognosis and monitoring for diabetes recurrence.


How many people have neonatal diabetes?

Neonatal diabetes is very rare. About 1 in 100,000 babies born have neonatal diabetes.


Who should be tested for neonatal diabetes?

Anyone diagnosed with diabetes at 12 months of age or younger should be tested for monogenic neonatal diabetes.


Can genetic forms of diabetes diagnosed at or under 12 months of age be distinguished from type 1 diabetes without genetic testing?  

A diagnosis of diabetes before 6 months of age makes monogenic neonatal diabetes much more likely than type 1 diabetes.  However, it can be hard to tell them apart: in both types, elevated levels of glucose (sugar) in the blood can cause symptoms of frequent urination, severe thirst and dehydration.  In extreme cases, the baby may experience ketoacidosis, a condition in which acid levels in the body rise to very dangerous or even life-threatening levels.  The only definitive way to diagnose monogenic neonatal diabetes is with genetic testing.


If my child has neonatal diabetes, can he/she be treated with pills?

There is a possibility that your child can transition from insulin injections to pills (sulfonylureas). However, this change is only possible with certain types of neonatal diabetes (such as those caused by mutations in the KCNJ11 or ABCC8 genes).  Any treatment changes and the best treatment for your child should be decided by his or her physician.


What are we hoping to learn about Neonatal Diabetes at the Kovler National Center for Monogenic Diabetes?      

Your participation will help researches understand more about genetic forms of diabetes, including how many people are affected, what treatment seems best for each different genetic type, and what other medical problems might occur due to gene mutations.

We have become the “go-to” center for monogenic diabetes in the U.S. In addition to being a resource of information for patients, parents and clinicians, we hope to increase the overall understanding of all of these disorders and raise awareness among the public, as well as among medical professionals, who are often uninformed about these rare types of diabetes.

  • Learn more about enrolling in our Monogenic Diabetes Registry, including for neonatal diabetes.
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