-By Adam Zwan

With the abnormal cold weather that is occurring in the United States for the past few weeks there have been a high number of comments regarding Global Warming.  Just a few of the comments that can be heard all over the United States are:

“I am really enjoying the Global Warming.”

“What’s with all this snow, I thought Global Warming was making everything hotter.”

“Ice again next week, this is not Global Warming, this is Global Freezing!”

The problem with the Global Warming theory is that it only predicts what occurs during part of the year and so during winter months the theory gets mocked.  Sometimes words alone do not explain everything they represent.  For instance, having Wolfram Syndrome does not mean that I am genetically linked to wolves or get the urge to howl at the moon.  Wolfram Syndrome is a genetic disorder that attacks the central nervous system and Global Warming is just a theory regarding climate changes.  The theory is scientifically correct.  Climates have shown warmer temperatures, glaciers/icebergs are melting, and birds are migrating further north than ever before.

When interacting with other people who mock a theory, like Global Warming, I feel it important to explain things a little further.  Due to human activity, the ozone layer around Earth’s surface is being damaged and depleted.  The ozone layer around Earth has two important aspects: block sun rays to prevent overheating, and capture heat to prevent freezing climates.  In essence, when the ozone is removed Earth will experience hotter summers and colder winters; both of which are being experienced at present.  It is only natural to mock or criticize something after an initial glance, I’m guilty of it.  I find myself taking back things I have said or thought after doing research and proving myself wrong and that has served as a valuable lesson in life.  As a result, I do not believe everything I hear before doing research and coming up with my own conclusions.

How To Slow Wolfram Syndrome Progression?

Adam (in white) knows how to keep moving.

Steps toward a cure for diabetes and Wolfram Syndrome are being made and successful results are occurring in scientific research.  The treatments are not yet available for Wolfram patients so it’s wise to attempt slowing Wolfram progression until treatments are available.  In addition to being a Wolfram patient I am also a huge advocate for correcting one’s health on one’s own without the use of prescriptions.

From the age of 7-years old to 16-years old I was placed on nine different prescription drugs to treat my various ailments, ranging from diabetes to kidney failure to elevated cholesterol.  Upon my own research, I discovered that each prescription drug will eventually require an additional prescription for resulting side effects. I took it to heart and disciplined myself to edit lifestyle and correct health issues without the use of medications; today I am down to three prescriptions and doing very well.

Diabetics without Wolfram can experience nerve damage simply due to uncontrolled glucose levels.  Thus, a Wolfram patient, whose central nervous system is genetically experiencing nerve damage, along with uncontrolled diabetes will be faced with hurried progression of kidney failure, vision loss, and hearing damage.  Therefore, I have spent a great deal of my life in becoming physically active and nutritionally sound so that I may more closely take control of my diabetes, my health, and my life.  Through a daily exercise routine and a low sugar/carbohydrate diet I have successfully kept my blood glucose levels, cholesterol, blood pressure, kidney function, vision, and hearing at a stable and satisfactory quality.

In my visits to Washington University School of Medicine in St. Louis during the annual Wolfram research event, doctors have told me that my lifestyle choices have proven to slow the progression of nerve damage caused by diabetes and Wolfram Syndrome.  In short, I was told to keep doing what I have been doing.

In January 2013, Adam Zwan was featured by the NBC affiliate in his hometown of Wilmington, North Carolina, WCET News. The story was to show what it is like for Adam to live  with Wolfram syndrome. That night, Adam began to experience severe abdominal pain and was rushed to the hospital where he remained for a week. Despite the delay from Adam’s hospital stay, the news team came back to finish their story.  Here is the five minute video on our good friend, Adam Zwan, where you can see for yourself the courage and spirit Adam exudes every day.

http://youtu.be/ElJXKyf1gf4

Sacrifice it or never experience it?

Early in life I began having to face several limitations and make many sacrifices due to Wolfram Syndrome.  With the diagnosis of Type I diabetes at 7 years old I was asked to limit and sacrifice enriched white flour and sugars in order to manage glucose levels.  Staying away from sugary and or starchy foods, like pasta, candy, cookies, and rice, I gained a passion for high fibrous fruits and vegetables along with drinking over a gallon of water each day.  As time went on I allowed initiating a network of friends and getting involved in intimate relationships to be placed on the back burner so I could manage my health through nutrition and physical activity.

Around age 16 I was faced with the diagnosis of kidney disease (Diabetes Insipitus of the Kidneys) and was asked to limit water intake to drinking only when thirsty.  Now, I cannot drink a lot of water during the day to decrease hunger, which was not to difficult to deal with but another limitation none the less.

Following the diagnosis of kidney disease and Wolfram Syndrome I began having issues with my digestive system (Autonomic Nerve Dysfunction and Gastro Paresis).  My high fibrous diet and Wolfram were causing my digestive system to shutdown sporadically.  After three different occurrences of sitting in the hospital for several days hunched over in pain with nothing to eat or drink, I was placed on a low residue diet (high protein – low fiber).  Nutritionist and other experts advised me to increase the amount of fat in my diet to make up for caloric deficits.  However, having Gastro Paresis knocked a high fat diet out of left field because fat slows down the digestive system causing glucose levels to fluctuate.  At this point in time 85% of my current diet has to be sacrificed in order to keep my digestive system in working condition.  It is tough getting filled up every day on eggs, yogurt, meat, and seafood, but telling myself that “It could be better but it could always be worst!” makes things easier to deal with.

The next big stepping stone was having my driver’s license taken away due to visual difficulties at 25 years old.  Independent transportation taken away is yet to be the most difficult thing to get used to.  Depending on family and neighbors to transport me to and from work, the pharmacy, bank, gym, and the grocery store creates a conflict when trying to make my own schedule, develop a social life, and maintain a career.

All in all, I would have to say that I would rather never experience something than to have it taken away later down the road.  It is easy to get by without a girlfriend because I have never had one and so I do not really know what I am missing.  On the other hand, having things, like food groups and a driver’s license, taken away makes me wish with all my heart that I could continue or have them back.