Jennifer K’s Story

I had meningitis as a 9-month infant, this left me with fine/gross motor deficits but I grew stronger and learned to compensate for the weaknesses through years of PT/OT. Then as a freshman in college, I started developing new symptoms, beginning with loss of vision, falls and unexplained pain. Through the years, my symptoms worsened and evolved to include multiple organ symptoms, it was diagnosed and misdiagnosed and rediagnosed through the years with everything from M.S. and lupus and in between. Each additional issue brought on more testing, hospitalizations, and presumed diagnosis. I kept getting weaker and weaker to the point I could hardly function. Eventually my doctors decided to send me to the Cleveland Clinic where I received the mitochondrial diagnosis. Although this explains a lot of my issues, I continue to get worse and have ongoing testing through multiple specialists and have gained additional diagnosis, but it’s hard to separate one issue from the next. I have continued therapy through the years to try to maintain whatever strength I have and slow the progression of my condition.

Since I’ve been chronically ill for so many years, I’ve had to stop working and have become disabled. As such, I am on a very limited income and have had to pay for therapy out of pocket, which is difficult, but so important for my overall condition to help both my strength and safety.