Wolfram Syndrome is a rapid aging and deterioration of the central nervous system. The damages consist of diabetes, chronic kidney failure, deafness, and blindness; it’s not anything to be ashamed of, it’s just not something worth bragging about on the first date.
I 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 […]
When I was 13 I saw a low vision specialist. He was trying different devices on me to get my vision a little better. Then he told me “you will never ever drive.” Well that about told me what my future was going to be like. But I was going to prove the doctor wrong. […]
A couple of weeks ago I was asked if one thing could be healed on me, what would it be? I thought about it for a while and decided it would be my hearing. I asked my mom what she thought and she answered blindness of course. She couldn’t believe I said my hearing. My […]
Moving out on my own in April 2015 is a chance for me to increase my confidence and begin experiencing more of life’s treasures. On the other hand, there are some health risks and family worries due to my taking a chance on my own. I tell myself to be thankful to have such a […]
I had a few weeks where my blood sugars were unstable. If I ate something that would make me go high, I was still low. This happened for about 2 weeks. Now the bad thing about the timing of low blood sugars is that I’d probably be able to have a lot of ice-cream since […]
My 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 […]
Hello, Hola, Tung, Ciao, Bon Jour! Recently I was contacted by someone who works with me. Her nephew’s girlfriend needed to write about someone with a disability. Of course she thought of me. Who better to pick from then someone with more than one disability? I received a phone call from her and she introduced […]
How to Avoid Trigger Foods Portion distortion is one of the many reasons for the rapid increase in obesity among individuals in the United States. One category of food that people tend to splurge on is called trigger food. Trigger foods are those that individuals go to when they are multi-tasking. For example, while watching […]
Last week, in honor of Rare Disease Day, the Snow Foundation was interviewed by the St. Louis ABC affiliate, KDNL ABC 30. The story focused on Stephanie Gebel and her fight for a cure for Wolfram syndrome and to revolutionize the diabetic world. Here is the story featured on the Jamie Allman Show.
You must be logged in to post a comment.