Ieva Sproģe-Grigorjeva: Rare genetic disorders cause progressive vision and hearing loss
Six years ago, Ieva was diagnosed with retinitis pigmentosa, and recently she learned she also has Usher syndrome type 2, meaning gradual hearing loss as well. She shares her journey of adaptation and daily challenges.
Ieva Sproģe-Grigorjeva, a former museum educator and trained doula, lost her sight gradually due to retinitis pigmentosa diagnosed six years ago. Now she has been told she also has Usher syndrome type 2, a rare genetic condition that will progressively impair her hearing.
Her parents were carriers of the gene mutations, and she had a 25% chance of inheriting both conditions, which she ironically calls a “black lottery”. The diagnosis turned her world upside down initially, but she learned to focus on inner resources and set boundaries. She continues to live actively with the help of her guide dog Pablo.
Adaptation to new environments and darkness is physically exhausting, she says. She has learned Braille and sign language, but no longer feels the need to prove she can do everything she used to. Communication tips include greeting a visually impaired person and calmly asking how to help, rather than grabbing their arm. She also stresses that guide dogs should not be petted as they are working and may be stressed.
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