, ,

Living With Wolfram Syndrome – Adam Zwan

Eye see you…no I don’t! Vision Loss and Wolfram Syndrome

Photo of Adam ZwanOne 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.

After grade school, I made it to college where I learned that there are avenues of help; large font textbooks, note takers, and CCTVs for magnifying materials at home. I was grateful for all the help provided by Vocational Rehab and disability resources at school. However, a few months after graduation, my vision continued to deteriorate and resulted in me having to hang up my car keys. I have been told that a driver assist technology is under way and will be marketed in a few years. Let’s hope.

At age 27 I feel a little amputated because I cannot transport myself independently to work, the grocery store, social events, or doctor appointments. Although visual struggles are a part of my life, I know things could be worse. I just tell myself that vision loss is nothing to be ashamed of; it’s just not something worth bragging about on the first date.