Wolfram Syndrome patients, like me, suffer from optic atrophy and deafness. It’s a belief that deaf and blind individuals rely on their other senses to experience life. A great example is Helen Keller because she had to depend on taste, smell, and touch to accomplish all of her lifetime endeavors. Unfortunately, vision and hearing are not the only senses that Wolfram patients struggle with.
Read more
Tag Archive for: adam zwan
Nerve damage caused by Wolfram Syndrome results in many lifelong complications, some minor and others very severe. Eating and drinking has been one of the never ending issues I have struggled with. Regarding food and drink, issues experienced by Wolfram patients consist of glucose fluctuations, mood swings, low tolerance for specific food groups, as well as metabolic problems.
Read more
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.
Read more
Thanksgiving 2014 was a fun filled day of food, family and laughter. The meal felt like a Golden Corral buffet without the Golden Corral. Thanksgiving used to be a favorite holiday of mine but due to Wolfram Syndrome it has become my least favorite. The family getting together and enjoying one another is a great event but the food is another story.
Read more
Eye see you…no I don’t!
One of the many struggles a Wolfram Syndrome patient will experience, is vision loss. As a young man going through grade school, I noticed my vision quickly getting worse. In a classroom amongst individuals my age, I stood out from the crowd by always sitting in the front row, squinting to see the chalkboard, and having to get close and personal with any reading material. Before being diagnosed with Wolfram Syndrome, doctors were unable to properly treat and diagnosed my visual difficulty.
Read more
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.
Read more
Have you ever experienced full body exhaustion but cannot fall asleep? Fellow Wolfram syndrome patients may know exactly what I am talking about. A snapshot of this sleepless exhaustion is lying in bed with a severe case of yawning while closing the eyes as tight as possible wishing for at least a few minutes of sleep.
Read more
Have you ever seen the movie Jack? In case you have not, Robin Williams (Jack) is the lead character who has a rare condition causing him to age three times as fast on the exterior. This is a good comparison when speaking of Wolfram Syndrome because as a 27 year old Wolfram patient I am, quote unquote, about 90 years old internally. Thus, it is like living the life of Jack but inside out.
Read more
Statistics are only numbers but for me they are motivation to stay physically active and nutritionally sound.
After turning 27-years old I thought about the Wolfram Syndrome statistics of 28-31 years of age as the life expectancy. I do not believe it will happen next year but at the same time I will not deny the possibility. All the while, I go to the gym everyday and tell myself that if an early life checkout finds me, I want to be able to say, legitimately, that I never gave up on fitness and nutrition. I did everything in my control to stay healthy.
Read more
My uncle and aunt from New Orleans, LA are retiring and moving to Wilmington, NC during August this year. As a welcome to Wilmington party the rest of the family helped to prep my relative’s new home.
We tried to show them a good time by going to restaurants and with trips to the beach. It was all a great welcome to Wilmington venue until flights were taking off and my body started to experience health complications.
It all started in the middle of the week on Wednesday with late night shivering and hot flashes. After experiencing fever symptom for three nights in a row I was taken to the emergency room to find out what was going on. I spent Friday night in the ER waiting to hear answers. After the urinalysis, blood draws, x-rays and questioning it was finally diagnosed. Since Wednesday the fever occurrences and shivering were all symptoms of bacteria in my urinary track, bladder, and kindest.
The infections have occurred so often that I was advised not to seek antibiotics until I had a fever that would not break and or I was experiencing unbearable pain. Thus, if I keep taking antibiotic for every infection the bacteria will evolve into an incurable one. As a result my infections are resistant to all antibiotics except for two IV antibiotics. This is my primary reason for not rushing to the ER before Friday night. Also, if the infections reach a resistance to the last two IVs then the next bladder infection will result in high blood pressure, high heart rate, and pain that will all finish with a heart attack.
By Saturday morning I was released home with three different medications to attempt until the blood cultures were executed. So right now I am experiencing any pain or shivering but the wait for blood cultures to confirm I am on the right antibiotics continues. All in all, welcome to Wilmington Aunt Gina and Uncle Rick!
You must be logged in to post a comment.