Tag Archive for: adam zwan

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Living With Wolfram Syndrome – Adam Zwan

The 2014 holiday season was a great one; lots of food, laughter, and stories of the past. Starting in October and lasting until January celebrating holidays is the thought on everyone’s mind. Celebration events do not occur without some withdrawals, especially for a Wolfram patient.

Beginning with Halloween and finishing with a New Years Day meal the eating is something that always brings my family together. With diabetes, gastro paresis, and low tolerance for fiber eating well takes on a whole new meaning. As a Wolfram patient, times of eating seem more like a chore than an enjoyable event. A Wolfram patient, like me, has to put a lot of time and effort into measuring, avoiding, and denying foods because eating the wrong thing could mean a visit to the hospital. Also, due to my increased sensitivity to insulin, gaining ten or so pounds results in glucose fluctuations. However, thinking about research efforts and searches for a cure help health struggles seem like just an event on the timeline.

Furthermore, my holiday season was filled with stories of life experiences that brought smiles, inspiration, and or jealousy. In my case, jealousy was a common feeling while family members spoke of vacations, relationships, and living independently. I’m 27 years old and listening to stories from family members makes me ask myself whether I have really lived yet. Reason being is that almost all of my stories pertain to health issues, hospital visits, and longing for changes in life. Happily, if research continues and success is achieved then I will be able to tell stories of my vacations, relationships, and independent living. All in all, the 2014 holiday season, minus a few health worries, was a memorable one.

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Living With Wolfram Syndrome – Adam Zwan

Wolfram syndrome patient Adam Zwan and family at Christmas time

The Zwan family celebrating Christmas with their festive holiday sweaters.

A Little Worried?

I feel lucky to have a family that loves me as much as they do, but like everything in life, there are some consequences. Before being diagnosed with diabetes and then Wolfram Syndrome, I could visit family members and make it an enjoyable event. I still enjoy seeing family, but my presence has changed from a pleasant visit to a worrisome task.

In previous years, I would pay visits to parts of the family and there would be lots of food, fun, and laughter. In the past few years I have felt guilty for creating so much fear and worry that I think twice before packing a bag to stay the weekend at someones house. The fear and worry that I speak of is due to my health and its complications, creating this mindset of “I hope nothing goes wrong while he’s here.”   My visiting experiences are filled with “Can Adam eat this?  Has Adam eaten enough?  Is Adam in pain?  Does Adam need to go home early?  Lord I hope nothing happens while Adam is here.” I have had one or two issues with glucose levels during the evening that no longer occur, but each time I stay somewhere, my family is adamant about using a baby monitor and/or sleeping on the sofa next to me just to make sure nothing occurs while I’m asleep.

I am very thankful to have a family love me as much as I do, but pleasant experiences have certainly changed due to Wolfram Syndrome. When I get the feeling that I am a fly in the ointment and not a pleasant visitor, I just grit my teeth and say that it could be worse and accept it and count my blessings. I try to stay optimistic by hoping and praying that something will change for the better in the near future.

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Living With Wolfram Syndrome – Adam’s Story

What Define’s One’s Life

Photo of Adam ZwanSome people are glorified for an invention or for a remarkable breakthrough in science.  However, others make their mark in history by being diagnosed with a rare illness that shortens life expectancy by half.  My place in history start in 1987 on September 18, living life as a healthy young man only to find health beginning to spiral downward in 1994.  The diagnosis of Type I diabetes was only the first mile marker in my marathon known as Wolfram Syndrome.  As one of 18 patients with Wolfram in the United States I found myself obligated to beat the statistics and surpass the life expectancy of 31 years old by controlling my diabetes and staying as physically active as I possibly could. I took a realistic look at myself and said that Wolfram Syndrome is the hand that I was dealt in life and it is my responsibility to make the best of what I have.

[pullquote style=”right”]I took a realistic look at myself and said that Wolfram Syndrome is the hand that I was dealt in life and it is my responsibility to make the best of what I have.
[/pullquote] fitness routine has become the highlight of my every day and I use Wolfram as my driving force to continue staying physically active.  My clique is “No one needs an excuse to exercise everyday but it’s nice to know that I have one.”  Each day starts at Gold’s Gym from 6a.m until 8a.m. then I continue teaching fitness classes from 9a.m. until 12p.m. at a wellness and rehabilitation center and then finish each day with teaching Taekwondo classes from 3p.m.til 6p.m.  Simply put, being physically active, and helping others stay active, and rising above the natural struggles of health are just a few of the things I would like to define my life.

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