Jeremy (middle), living with Leber hereditary optic neuropathy (LHON), with his mom, an LHON advocate, his dad and his siblings
Jeremy Poincenot arrived for his sophomore year at San Diego State University in 2008 with 20/20 vision and no known history of eye disease. By Thanksgiving, he was legally blind.
The cause: Leber hereditary optic neuropathy, or LHON, a mitochondrial disease that causes progressive damage to the optic nerve, leading to sudden, unpredictable loss of central vision. As is the case for many, Jeremy had no indication he was affected by LHON until he woke one morning to discover much of his vision in one eye had vanished. The second eye followed soon after.
The sudden strike of LHON is understandably devastating for any family. But for Jeremy and his mother, Lissa, it was time to get to work. Lissa, a marketing executive raising three teenage children with her husband, began a quest for answers. Nearly a decade later, the quest continues.
In those early days, with no established LHON patient community and very few resources available, Lissa scoured the internet for information, voraciously taking notes from the one online forum for patients and caregivers she could track down. When she traveled, Lissa always made a point to find out if there was anyone with LHON in the area so she could personally meet them.
From those earliest days, Lissa has devoted herself to building and nurturing the LHON community that did not exist when Jeremy was diagnosed. She compiled all the information and insights she acquired into an online resource, www.LHON.org. She also organized an annual LHON conference to bring together not only LHON patients and their families, but also researchers, doctors and LHON experts to share their experiences and raise awareness of this rare disease. This community is helping to fill the gap that Lissa and Jeremy found when they first encountered LHON nearly a decade ago.
Over time, Lissa and Jeremy have developed a family motto: focus on the good. “Put your attention toward what you have, and make that the best it can be. That’s the lesson – look for the path forward,” Lissa says.
Since his LHON diagnosis, Jeremy has graduated from college and has started his own business as an inspirational speaker, traveling around the country sharing his story. Always an athlete growing up, he also picked up the sport of blind golf and earned the title of World Blind Golf Champion.
Jeremy attributes much of his success to his mom. “My mom is amazing. She is the reason I am where I am now,” he says. “She’s been getting the answers to the questions we had at the time of my diagnosis. And she’s doing that for as many people as she can – finding a way to get them to where I am today.”
Lissa has found a great sense of purpose and fulfillment as an ambassador for the LHON community. She and Jeremy are committed to continue raising awareness of LHON, and to make progress toward better understanding this disease by bringing members of the community together to share new research.