Congenital Hyperinsulinism International

HIstories: Lizzie’s Story

real life stories of congenital hyperinsulinismI’m 24 years old and I was diagnosed with hyperinsulinism when I was born. I weighed a whopping 11 lbs 9 oz, and my brother before me was born with the same thing. My sugars went constantly low and I underwent a pancreotectomy where I had 90% of my pancreas removed. My older brother had the same surgery, but with less fortunate results as he has been diabetic and on shots or the pump for his life of 26 years.

This rare disease was not as well known about 25 years ago as it is now. So it is still somewhat of a miracle that I am doing relatively well to this day. Since my surgery at 2 months old, I had to check my sugar once in awhile and things were okay. When I was in 6th grade, I received news that my A1C was less than stellar and it was then that I started taking shots. I then started the pump not too long after. However, unlike a true diabetic, I had to worry about not only my sugars going high but them going low as well. My mother is a pediatrician at CHOP and always likes to explain my pancreas as slow to turn off and slow to turn on. I started becoming very active in 8th grade and it is then that I was able to stop taking insulin again. My exercise allowed me to gain back control over my sugars. Throughout middle and high school, I played soccer and ran year round. I took my sugar probably between 3-5 times a day and would always be prepared before long runs or workouts.

I was fine for the most part until I kept getting not so great A1Cs in college. Once I graduated I realized I might have to deal with this again, because I know what can happen long term when your sugars are too high. I started experimenting with different drugs such as metformin, acarbose, and januvia with the help of my endocrinologist. I have now been on januvia for about a year and while it’s worked alright, it is far from perfect. I check my sugar about 8-12 times a day and I have discovered so many patterns linked with my sugars. My sugars still go low to this day so picking the right medication that lessened my highs while not making me go low all the time is difficult. Despite some recent injuries, I live an active lifestyle and still do everything that a typical 24 year old does. I have spoken to mothers when I go for my appointments, because doctors want families to see that it is possible for their child to live a normal life. I know that my mom and family dealt with a lot with my brother and then again two years later with me when this rare disease had both of us in the hospital way later than healthy babies stayed.

It’s always been pretty frustrating to explain to people what the issue is. I can’t exactly say I’m diabetic, but no one really knows what congenital hyperinsulinism is. I’m sure other people share this frustration. However, as frustrating as some days can be for me because my sugars are sometimes out of my control, I thought it might be nice for families to read about not only other children sharing the same health issues, but about someone like myself that has turned out just fine. I plan to apply to physical therapy school this coming summer and hopefully one day run my own health and wellness center.

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