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Olet tässä: Etusivu | Ajankohtaista | Omakohtaisesti Usher III -oireyhtymästä englanniksi

Amerikkalaisella Rebecca Alexanderilla on Usherin oireyhtymä tyyppiä 3. Hän on kirjoittanut elämästään ja aistien heikkenemiseen liittyvistä pohdinnoistaan kirjan "Not Fade Away", jota voi tilata Amazon.comin kautta.

Usher III Iniative -verkoston kautta tullut tiedote kirjasta englanniksi:

"Rebecca Alexander, who was profiled in our newsletter in late 2013, has published a book about her life and experiences with Usher III. This inspiring story follows Rebecca from her childhood and diagnosis in her early teens to today.

In the face of devastation, Rebecca has risen to every challenge she has faced. She was losing her vision and hearing and her body was broken, but she refused to lose her drive, her zest for life and – maybe most importantly – her sense of humor. Now, at 35, with only a sliver of sight and significantly deteriorated hearing, she is a psychotherapist with two masters’ degrees from Columbia University, and an athlete who teaches spin classes and regularly competes in extreme endurance races. She greets every day as if it were a gift, with boundless energy, innate curiosity, and a strength of spirit that have led her to places we can't imagine.

In Not Fade Away, Rebecca tells her extraordinary story, by turns harrowing, funny and inspiring. She meditates on what she’s lost—from the sound of a whisper to seeing a sky full of stars, and what she’s found in return—an exquisite sense of intimacy with those she is closest to, a love of silence, a profound gratitude for everything she still has, and a joy in simple pleasures that most of us forget to notice."

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Päivitetty: 17.9.2014 Webmaster