for 18-year-old adam brown, visual impairment has always been a part of life.
“i’ve had retinitis pigmentosa since birth,” he says.
retinitis pigmentosa is a term used to describe a group of genetic disorders that damage photoreceptors, the light-sensitive cells in the eye. this causes visual impairment. the disease is progressive, meaning it tends to get worse over time.
usually, the first photoreceptors affected are the rod cells, which are responsible for night and peripheral vision. over time, the cone cells, responsible for colour vision, central vision and seeing fine details, are also affected.
retinitis pigmentosa is an inherited genetic disorder, so it often runs in families. adam’s 21-year-old sister jenna also has the disease. in the brown family’s case, however, the kids’ diagnosis came as a complete surprise.
“we didn’t know of anyone in our extended families that had this disease,” adam’s mother charmain says.
while adam has been legally blind since birth, he has not let that stop him from doing the things he wants to do.
today, he’s an advocate for the visually impaired, sharing his experience in the hopes of raising awareness.
adam uses tiktok to discuss being visually impaired and some of the challenges he’s facing accessing treatment for his condition. in march 2021, one of his videos went viral, garnering over 450,000 likes.