The Hilbert Family – Lisa & John Hilbert, Max (age 15), Sam (age 13), Joseph (age 9), Elise (age 7)
Describe your family in three words.
Happy, Busy, Energetic
What are some of your favorite family activities?
Going to the movies, Mini-golf, Hanging out at the pool
If you feel comfortable sharing, what mutation does your family have?
My 15 year old son and I have the GCK mutation. It has a much longer, complicated name. This one I can remember.
When were you diagnosed with diabetes, when were you diagnosed with a genetic form of diabetes, and when did you join the Registry?
I was diagnosed as an “atypical” Type 2 diabetic in 2004. My Endo called me “atypical” because I didn’t fit the physical profile, I never progressed to needing additional medicine other than Metformin and I could only take very little insulin and I would crash. Prior to that, I was diagnosed in 2000 and 2002 with gestational diabetes. I never had additional testing after my first 2 pregnancies. Only after my third, when I became very ill, was I retested and diagnosed with Type 2. Eight years later, I saw an ad for the Registry and decided to find out if my atypical Type 2 was actually something else. Once I was diagnosed in April, 2013, I enrolled all four of my children in the study. My oldest was diagnosed with the same mutation that I have. The other three are awaiting their results.
Did you know what diabetes was before your personal encounter with the disease?
I work in the medical field so I was pretty familiar with diabetes prior to my diagnosis. In my childhood, my grandmother would always say she had “sugar”, so my guess is that she was also a part of our GCK family.
What are some of the challenges you face with current diabetes management, and how do you deal with them?
My biggest challenge is finding time to eat right and exercise. For all the years that I thought I was a Type 2, I was on a very restrictive diet with a rigorous exercise routine. I fell off the wagon a bit when I got my GCK diagnosis. I am working hard to get back to where I was. An even bigger challenge has been getting my son to eat well. He found out that he had MODY2 when he was 14. His immediate reaction was to rebel and eat everything that he shouldn’t. We are working on it.
Has your genetic diagnosis changed your approach to diabetes management? If so, in what ways?
YES! Unfortunately, as you read above, I’m not as good about my diet and exercise. It’s good to have goals though! Previously, I had taken Metformin, Lantus and Humalog PRN. I was able to stop all my medications. I also don’t check my blood sugar every day. Instead of every 3 months, I see my Endo once a year. I had thyroid cancer 6 years ago, so most of my Endo visits are to discuss my thyroid levels. My HgA1C has been steady around 5.2, lower than before I stopped my medications.
What are some words you live by that you would like to pass on?
Life is full of surprises. They may not all seem good at the time, but in hindsight, we learn from them.
Any other thoughts?
Never be afraid to ask questions about your health. If I had pushed a bit harder, I would have gotten my MODY2 diagnosis years earlier. Accurate diagnosis leads to accurate treatment!