Living with LHON: An Interview
Leber Hereditary Optic Neuropathy. Commonly referred to as LHON, the disease is a mouthful to pronounce. On average, only 100 United States citizens are diagnosed per year, yet those 100 lives are drastically changed the moment symptoms start to unfold. Dreamscape Foundation Founder Joe Sehwani is one of the few to inherit it unexpectedly. His experience was a core influence in the creation of our non-profit. Yet he isn’t the only one who had to learn how to live life anew thanks to this rare disease. Kenny and Justin Jongsma are two young examples. For the last 7 years, they’ve been adapting to the limitations brought on by LHON from their home in New Jersey. The disease impacts one’s central vision to a degree that is often irreversible. Below is their story, told from their own perspective. From the moment of diagnosis to how they adapted to living with their disability, the 28-year-old twins share their insight on what life has been like with LHON.