Meghan Holohan is a digital health reporter for TODAY.com and covers patient-centered stories, women’s health, disability and rare diseases.
When Rebecca Alexander was in college she was grappling with a recent diagnosis of Usher syndrome, a genetic condition that causes vision and hearing loss. Meeting the head of deaf and hard of hearing students, Joan E. Smith, empowered her. “ was my safe haven. It was a place where I felt so normal.
” Usher syndrome Usher syndrome is a rare disease impacting about 20,000 Americans, according to Jeff Holt, Ph.D., chair of the Usher Syndrome Society’s scientific advisory board. “ is an inherited disorder that affects both the ears and the eyes,” Holt tells TODAY.com. “It’s subcategorized into three different forms of Usher syndrome, 1, 2 and 3.” People with Usher syndrome develop hearing loss and retinitis pigmentosa, which progressively narrows the field of vision leading to blindness.
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