You are here: Home / For Patients & Families / Patient Stories / I am Ben

I am Ben

This is my Story:


When my parents brought me home from the hospital as a newborn, my sister and grandmother were waiting for us to celebrate our homecoming.  Everyone in the family was excited, but my parents couldn’t help worrying about the fact that, even for a newborn, I seemed unusually sleepy and lethargic.

Additional Patient Stories >

I have Congenital hyperinsulinism.

Congenital hyperinsulinism (HI) occurs as a result of over-production of insulin in the pancreas, causing low blood sugar (hypoglycemia).  Brain damage can occur if the condition is not recognized or if treatment is ineffective in preventing hypoglycemia.  Stroke-like symptoms, cerebral palsy and blindness may also be caused by hypoglycemia.

  • This condition is the most frequent cause of severe low blood sugar in newborn babies and children.
  • A number of causes of hyperinsulinism exist.  Some forms will resolve and are considered transient.  Others result from genetic defects and persist throughout life.
  • Five genes are known to be associated with this condition but researchers are still learning about the genetic causes of HI.
  • The risk for permanent learning disabilities is difficult to predict and depends on the frequency and duration of hypoglycemic episodes.
  • Treatment may involve IV glucose, medication, a special diet and, in some cases, surgery.

Read a longer story about Ben, written by his mother >

Copyright ©2015 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .