Living With Wolfram Syndrome – Adam Zwan


wolfram syndrome independenceI recently moved out of my parents’ home to live on my own in an apartment all in an effort to gain some independence and self-sufficiency. It has been a start to the next chapter in my life with both pros and cons. It feels good to depend on myself to fulfill everyday tasks but it will take some time for my family to relax and feel confident that I can fend for myself.

The whole scenario was made possible after acquiring the Dexcom continuous glucose monitoring system with Share. This device accurately monitors my glucose levels and through Bluetooth communicates with five chosen followers who can also see what my glucose levels are. For the first time in my life other people can see part of what my body is experiencing. As some may have guessed, when my glucose level is below 150 mg/dL all my following family members believe that my glucose is plummeting and I need assistance. The drama has settled somewhat and they now see that an assistant is not needed to feed me orange juice and peanut butter but I am fully capable of serving myself.

Next in line is the cell phone chaos. When my glucose falls a little bit I receive phone calls from three or four of my followers, regardless of the time of day. If I do not have my phone by my side, I am in the shower, using the restroom, or in the gym and someone is trying to call me but I am unable to talk it is all perceived that I am in trouble. Thus, a family member is dispatched to my apartment or 911 is called and then canceled when I become available. I know I should just be thankful that I have a family who cares for me as much as I do but it make everyday living a bit difficult. Although, the yo-yo effect my glucose readings go through is mostly my fault. It seems the harder I try to control my glucose levels the harder it becomes. The exercise I participate in six times a week, my Gastro Paresis, and my limited diet all play a part in my frequent glucose fluctuations.

Everyone has a story and everyone has something he or she struggles with, my struggle in life is health (Wolfram Syndrome). I remind myself everyday that challenges in life are a given but coping and pushing forward are choices. My prayers rest with the Snow Foundation to fund research and Dr. Urano in finding a treatment for Wolfram Syndrome.