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1:23
.usher there is a test called a bubble study that evaluates to see if your heart has a hole in it -
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I was diagnosed with retinitis pigmentosa at 12. At 19, I learned it was Usher syndrome and was told I’d be completely blind by 30. At 36, I climbed Mount Kilimanjaro. My vision had narrowed to just 10–12 degrees of central sight, but I wasn’t willing to surrender to that timeline. That was ten years ago. And I’m still finding ways to live fully, even as my vision continues to change. You don’t need perfect conditions to start living your life. You just need to begin. Accessibility: Footage from
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Facebook
Rebecca Alexander
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Usher syndrome is a genetic condition that affects both hearing and vision. It usually causes hearing loss and gradual sight problems due to retinitis pigmentosa. It’s actually one of the most common conditions in children that impacts both senses. Everyone with Usher will experience different levels and progression of sight and hearing impairment. As the condition progresses, it affects how people manage day to day activities. Our specialist Usher team have a world of knowledge, information and
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"I can do anything." When Elizabeth first learned about her Usher syndrome diagnosis, her access to technology and career opportunities felt limited. But at Helen Keller National Center, she discovered something transformative: with the right training, accommodations, and adaptive technology, she can live independently and pursue any goal. Watch Elizabeth, "DeafBlind Woman of Steel" and former competitive bodybuilder, share her powerful journey from feeling stuck to embracing a sea of possibilit
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Angellica-Louise Clayton-Spray
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Check out all of our blog posts! 💙 The Usher Syndrome Society blog is where we share authentic narratives about life with Usher syndrome written by individuals living with this rare disease, as well as friends, family members, and supporters of our community. Thank you to Pam Aasen (@paasen23 ) who continues to help drive this initiative forward and thank you to everybody who has contributed to our blog so far! If you are interested in sharing your own story on our blog, please send us a messag
474 views
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Usher Syndrome Society
1:00
Today is Usher Syndrome Awareness Day 🖤 I live with Usher Syndrome type 2 which means I am deaf blind. My world gets quieter and darker over time but my voice is here to make sure no one forgets us. The Usher Syndrome Coalition has one goal: to find treatments and a cure while making sure every person and family living with this condition feels seen and supported. Usher Syndrome is the leading cause of combined deafness and blindness yet so many people have never heard of it. That is why I spea
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Ronnie McKenzie
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USH2026 is ONE YEAR from today! We're excited to gather with our incredible #USHCommunity for the largest global gathering of the Usher syndrome community. The USH Connections Conference offers an invaluable opportunity to learn about the latest treatment developments from leading researchers while connecting with hundreds of individuals, families, and professionals in the deafblind community. To make this our best conference yet, planning is underway with accessibility providers, exhibitors, pr
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