Tag Archive for: wolframs

, ,

Living With Wolfram Syndrome – Adam Zwan

Strange Truth

Photo of Adam Zwan

Adam Zwan

Do you live a risky life or do you fly straight and narrow?  After being diagnosed with Wolfram Syndrome I began paying close attention to my surroundings and the lives of others.  Strangely, it became clear that individuals who live life without taking chances or making risky decisions end up with the dull side of the blade.  Unfortunately for people who avoid trouble and mischief, consequences are paid with permanent life changes.  On the other hand, those who live on the edge seem to have a little more fun in their lifetime; these individuals may be faced with consequences but the price is paid and the risky lifestyle is continued.

For instance, when someone bends the rules a little bit or even breaks a law, like drinking and driving, he or she gets caught, pays some fees, and is able to repeat the same mistake again.  After paying the consequences a risky person will look back and say “it was fun and maybe I’ll try it again.”

For someone like me with Wolfram Syndrome risks may involve eating a certain food or exercising later in the evening.  Thus, these small risks end in the emergency room with doctors telling me “it is a wait and see process and we cannot give you pain medication because it will make things worse.”  I have never broken any laws or made my parents worry that I might cause trouble but I have experienced hardships, sacrifices, and limitations throughout my whole life.  Whether it is a sibling, a friend, or someone you read about, it appears that lifetime consequences are faced by individuals who least deserve them.

When my mind is filled with thoughts of jealousy I just go to the gym sweat until my mind is clear, exercise until it hurts, and make sure I don’t have enough energy to think when I walk out the door.  People tell me all the time that I am a good guy and do not deserve all the issues I am faced with.  The only thing I can do is reply that life is not always fair and those who can rise to the challenge and beat the odds can make a wonderful difference in the community.

/by
, ,

Living With Wolfram Syndrome – Lauren Gibilisco

“Some Like It Hot and Some Sweat When The Heat Is On”- Hypersensitivity to Heat

Hello Everyone,

I told you last week the main symptoms of Wolfram Syndrome.  Today I am going to talk about a lesser symptom that greatly impacts my life. This symptom is hypersensitivity to heat. My body has a problem regulating temperatures.  “Some Like It Hot” only begins to describe my house.

Photo of Lauren GibiliscoFor those that don’t know me, I am from Nebraska.  The weather here can be very windy and unpredictable.  This last week has been extremely cold (for normal people).  The temperature was in single digits with wind chills below zero.  We also had three days where the regular temperature was -10 to -15 with wind chills -20 to -30. In simple terms, I hate the heat and love the cold.

Here is where I have a constant argument with my mom.  She wants me to wear a coat in the winter.  She lectures me on how the cold can affect my skin.  I hate wearing a coat.  It always makes me hot no matter what the temperature.  Here is how I respond to people.  “I never wear a coat unless I can see my breath.”  Ha-ha, I can never see my breath so I always win that argument. I like to exercise at home, especially during the winter, so when I get hot I can just go outside to “chill out”.

In the summer, it can get very hot and humid here.  This makes me a prisoner in my home.  I sweat profusely and I am unable to be outside for any length of time. I can no longer take walks, go to amusement parks or baseball games. The only activity that works for me is swimming.  The cold water keeps my body cool.  My parents had to install a separate central air conditioner upstairs just to keep me cool.  I don’t like it to be any warmer than 65 degrees.  So picture this, it is 100 degrees outside and my mom is wearing a sweater and socks trying to stay warm inside the house.  So what a family we are.  I hate to wear a coat in the winter and my mom has to wear a sweater in the summer.  Oh well I’ve always loved being unique.

Have a great week everyone and enjoy the weather. ☺

/by

We Say Goodbye to a Wolfram Trailblazer and Friend

Photo of Jon Wasson and Stephanie Snow Gebel

Jon Wasson and Stephanie Snow Gebel

Jon Wasson

Yesterday our dear friend Jon Wasson passed away after a lengthy battle with Cancer. Jon was instrumental in the discovery of the Wolfram gene (WFS1). Jon worked closely with the late Dr. Alan Permutt, both bringing Wolfram syndrome research to the forefront at Washington University School of Medicine (WUSM).

Jon played a major role in establishing the Wolfram clinics at WUSM bringing together families from around the world who are dealing with the disease. Jon’s kind and personal connection with the families with Wolfram Syndrome led to the success of the Wolfram Clinic and Registry. Jon was a major supporter of the Snow Foundation and a true friend to our family. He will be sorely missed.

“Jon was always kind and thoughtful, and dedicated to our research on Wolfram syndrome. Great loss for all of us.” – Fumihiko Urano, MD, PhD – Washington University School of Medicine

“I will miss Jon tremendously. He was straight-shooting, honest, insightful and very passionate about his work, repeatedly going the extra mile to help our Wolfram Syndrome families and to facilitate our research.” – Tamara Hershey, Ph.D. – Washington University School of Medicine

/by