“It’s a very, very powerful experience to be in the company of people just like me and being able to share the same experiences.”

Andy Marks is a skier, a boxer and a bowler. He also enjoys movies, plays backgammon and is a stand-up comedian. His activities don’t seem too far out of the norm for a 31 year old. The difference is that Andy is blind. Andy is living with Leber’s hereditary optic neuropathy (LHON).

“My diagnosis wasn’t like the movies at all,” Andy remembers. “There wasn’t any big moment where the doctor sits me down and tells me this is going to change my life forever,” he said about that meeting between him and his neuro ophthalmologist in February of 2014. Andy learned, after blood work and other testing, that he has the most common mutation of LHON. He is grateful that, unlike other patients with LHON, the diagnosis came quickly.

In September 2013, Andy was living near Orlando, Florida, working for Disney in their marketing department. While working on his computer, Andy noticed that his vision wasn’t quite what it should be. The concern prompted a trip to the optometrist for an exam. During the exam, he noticed that his vision wasn’t perfect in one eye; however, in the other, Andy couldn’t see anything on the eye chart but the largest letter ‘E’. The troubling discovery sent Andy to a retina specialist for additional scans.

After that visit, Andy realized that his vision in both eyes was being affected. “I was Christmas shopping for a present for my sister and realized I had to take a picture of the price tag and zoom in on it on my phone in order to see the price.” A few days later, a near accident made Andy realize he needed medical help. “I was in my car driving home and, out of nowhere, a biker appeared to my right. He wasn’t there before. I didn’t see him,” he recalled. Thankfully, there was no accident, but that was the last day Andy drove a car. An appointment with a neuro ophthalmologist was scheduled in early 2014. The diagnosis of LHON came soon after.

Later in the year, Andy was at an LHON program session at a Mitochondrial Medicine meeting in Pittsburgh where he met others who live and work with his form of mitochondrial disease. “It’s a very, very powerful experience to be in the company of people just like me and being able to share the same experiences,” Andy said. It was at that meeting where he met fellow LHON patients Jessica Loomer and Maria Johnson. The trio decided that they did not want to wait for a whole year until the next conference, so they brainstormed an idea to do a monthly conference call entitled, “LHON Live”. Andy and Jessica host the conference and discuss topics affecting the LHON community, share stories with members of the community and offer advice on navigating everyday life. “It’s been five plus years, and while our goals may have shifted, our focus remains to be there for each other”.

Today, Andy lives in New York City and works in market research for the Audible division of Amazon. “I am the first one to tell you that New York City is the best place for blind people,” Andy said. He loves the chaos and noise. “Generally, if you are a person with a disability, people are good and want to help. Having more people means more people who can help. I’m never in an intersection by myself. If I am walking with a cane, people are very proactive to help me”.

These days, Andy says he doesn’t make too many commitments about the future. His hope is that his future holds the same for him as if he had his vision and to have a life that makes him happy without it.