Story by Michael Malecha, Mito Warrior
I learned in 7th grade that the mitochondria are the powerhouse of your cells. I didn’t really understand stand why until August 25, 2014, when I was told I’d be legally blind in 6 to 8 weeks. I found out that my “powerhouse” was dying; the mitochondria in my optic nerve were sick and weak. I learned that I have Leber’s Hereditary Optic Neuropathy (LHON).
With the help of the UMDF’s National Symposium in 2015, I was able to attend the LHON sessions that connected me with amazing research doctors and a new extended family within the LHON community. The LHON community has done a great job with monthly calls for everyone touched by LHON.
They have been doing calls for teens, affected adults, moms, and dads, and discussing themes like navigating education and more.
My family has become close to other families affected by various other mitochondrial diseases. It is important to me and my family to spread awareness about mito. Every person is so unique, and mitochondrial diseases present differently in each person.
In 2016, I was fortunate to have regained about 90% of my vision. I am currently working full-time on my family’s dairy farm in Minnesota.
LHON Awareness Day is September 19.
Join International Mito-Patients for a free live online event, ‘The Importance of Technology for LHON Patients’ on September 19th – 9AM Pacific/11AM Central/12Pm Eastern.