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From Sussex, New Jersey, USA:

My 23 year old son and my 22 year old daughter were both diagnosed with nesidioblastosis almost from birth, and I also have a 19 year old daughter who does not have it. When my son was two weeks old, they removed almost all of his pancreas, and he has been on insulin since then. My daughter had about 50% of her pancreas removed, was on a leucine-sensitive diet to control her still low blood sugar, and at the age of 13, she had to go on insulin shots. Neither of them have to take any medication other than insulin. They both do very well and are healthy, happy young adults.

Since my son and daughter were born with this disease and now have to take insulin, will they develop the same problem as any other person with diabetes? What are the chances of their children having nesidioblastosis? My daughter is married and hopes to one day have a family.


The exact genetics of nesidioblastosis are not exactly known. I would guess if your daughter does not have it by now that she likely has some different genetic predisposition compared to her two siblings with the disorder.

In terms of long term complications, this reflects glucose control more than anything else. The DCCT. and other studies clearly demonstrated that glycemic control is the prime factor relating to complications. Many other studies have taught us that genetic factors also play a key role. Control matters no matter what the cause of the original beta cell deficiency.

Family history of other cardiovascular problems plays a big role in increasing or decreasing the risks along with blood glucose readings.


Original posting 2 Sep 2001
Posted to Nesidioblastosis and Complications


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Last Updated: Tuesday April 06, 2010 15:09:26
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