Living With Wolfram Syndrome – Adam Zwan

Counting My Blessings

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. 

The rapid aging and deterioration of my central nervous system has resulted in many health complications that usually occur later in life.  These health complications I am troubled with are prevalent in the lives of almost all Wolfram patients beginning at birth.  In my own lifetime, I have experienced Diabetes, chronic kidney failure, decreased vision, decreased hearing, loss of taste, loss of smell, and a weakened immune system making me more vulnerable to the everyday free radicals.  My aging central nervous system is probably why I can relate so well to elderly individuals; conversations always contain “yes sir, been there, done that”, and “yes, I have that problem too.” 

Wolfram may cut my life short but it just reminds me to be thankful for what I do have and count my blessings.  Not being bed ridden, still having brain activity and still being able to use my legs and arms makes me realize that Wolfram syndrome may be a tough bullet to chew but things could always be worse.  So long as the Wolfram research and the Snow Foundation are doing well, I choose to keep fighting and hoping for new developments.