Tag Archive for: kidney failure

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Living With Wolfram Syndrome – Adam Zwan

PHD: Pray, Hope, & Don’t Worry

Wolfram syndrome moving vanMy whole life has revolved around health status and trying to control the progression of Wolfram syndrome. Even though the harder I try, the more difficult it seems to get. I decided to take a big chance and try living on my own. It has been made clear to me that everyone around me worries regardless of the circumstances. Thus, worrying will continue the rest of my life so I must make a change and do something for myself.

Wolfram syndrome is just a diagnosis of lifetime worrying: diabetes, kidney failure, deafness, blindness, and paralysis; it’s like a never-ending story. The worrying began for me at age seven and only became worse as of today: food, glucose levels, seizures, kidney/bladder infections, gastro paresis, sanitary conditions for catheterization as well as visual and hearing difficulties. I made a pact with myself to stop worrying about making others worry and try to broaden my horizon by enjoying life. It all starts with the first decision I have made, on my own behalf, of moving out and getting a place of my own. Sure living on my own will be difficult at first, but life as a whole is difficult and coping is something I have done since the beginning.

In the end, I will be able to boost my confidence by saying, “living on my own is a possibility and I am proving it.” Increasing awareness and funding research at Washington University in St. Louis is a fantastic venue but today I must rely on myself to slow progression as much as I can through fitness and nutrition while I experience the now. However, if living on my own does not work out I give everyone permission to say “I told you so.”

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Living With Wolfram Syndrome – Adam Zwan

Chasing the Numbers

Adam Zwan struggles with his glucose levels.Wolfram syndrome makes it more difficult to treat and control all other more common illnesses. A Wolfram patient has to deal with diabetes, kidney failure, optic atrophy, and deafness but all these conditions are further complicated due to Wolfram syndrome. Currently, one of the most troubling tasks in my life is trying my best to control diabetes.

In simplest terms it is called chasing the numbers; these numbers represent glucose readings. Wolfram syndrome has increased my sensitivity to insulin and as a result, causes me to require less insulin to combat food and high glucose readings. On the other side, I have developed gastro paresis, which is a fancy term for delayed stomach emptying. There have been many cases where regardless of what I eat my glucose level is uncontrollable.

With all the complications due to Wolframs, any time I swallow something it is an uphill battle. My increased sensitivity to insulin causes an immediate drop in glucose level after taking insulin to combat carbohydrates. Hours after eating, a jump in glucose level occurs because my stomach has finally emptied the food I ate sometimes 15 hours earlier. These glucose fluctuations may be difficult and frustrating to deal with but I’m just thankful that I can still eat food and not depend on a feeding tube.

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