The discussion on albinism, defined as the genetic condition with insufficient pigmentation of skin, eyes, and hair, is becoming increasingly significant. This rare disorder occurs at about 1 in every 20,000 births and is classified as a designated rare disease by the Japanese government. Among those affected is Ririko, a 23-year-old influencer who actively speaks about her experiences of living with albinism.
Albinism leads to several challenges, particularly reduced resistance to sunburn and associated vision impairments. "アルビノは、生まれつき身体に色素がなかったり、少なかったりする遺伝子疾患です。" explains Ririko, underscoring the biological basis of her condition. Ririko’s skin requires diligent protection from sunlight; any lapse can result in painful consequences.
She recalls times when she wandered outside without sufficient sun protection, saying, "ほんの少しの時間でも、日焼け対策をせずに外に出てしまうと、肌が赤くなったり炎症を起こしたりしてしまいます。" This necessity complicates her daily life, as she must apply sunscreen and dress appropriately every time she steps out.
Visually, Ririko faces heightened sensitivity to light, requiring her to navigate the world carefully. Her condition worsened two years ago when she was diagnosed with glaucoma, with doctors warning her, "一般的な緑内障なら、初期段階で手術すれば改善できるそうです。" Unfortunately, due to her genetic limitations, surgical options are extremely limited.
Given the severity of her condition, doctors have predicted she might face blindness within five to ten years. Surprisingly, Ririko recounted her emotional response to this diagnosis: "中高時代を特別支援学校で過ごした経験があるから、ですかね。" This past experience provided her with insight and perspective from peers who faced greater visual challenges—blindness did not lead to despair or misery among her friends.
Ririko believes people with visual impairments often develop heightened abilities in their other senses. "視覚以外の感覚が鋭くなる人が多いように思います。" This adaptability is illustrated as she shares fond memories from her time at the special education school, where students engaged deeply with music, using it as both enjoyment and expression. Her talent for music was evident, recalling, "保育園に通っていたときは、先生が弾いているピアノを聞いて、真似して即興で弾きだしたことがある。" Music became her haven, fostering independence and creativity.
Ririko's story is one of resilience, demanding awareness, and simplicity, urging society to recognize the rich lives led by those with albinism and related disabilities. Through her advocacy, she aims to dispel misconceptions, emphasizing the need for proper education and support systems for individuals with conditions like hers.
