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Bonus* Week Nine – Mamiko (Japan)

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Description of your submission and why you chose it for submission

Since being diagnosed with NMOSD, I have not been strong enough to sing opera arias. Finally, I was able to sing an aria “Un bel dì, vedremo”, Puccini’s Madama Butterfly in my sixth year.

When were you (or your loved one) first diagnosed with NMO?

I was diagnosed NMOSD in 2016.

Please describe your journey with NMO

One day in June 2016, I was suddenly struck by a high fever and intense nerve pain, and was quickly paralyzed from the chest down, unable to walk, and possibly in a wheelchair for the rest of my life. Cervical vertebrae 2 to thoracic vertebrae 10 were severely inflamed. After two months of acute hospitalization and five months of rehabilitation, I was able to walk. I am now back on stage as a singer as well, but I live with many aftereffects and medical conditions.

What has been the most challenging part of having NMO?

I was totally paralyzed from the chest down, so I went to rehabilitation until I could walk as it was a challenge for me. Rehab was not difficult and I was happy every day! Another challenge was to sing in front of an audience on stage again. I was paralyzed, which meant that I could no longer use the muscles that I used to use to sing. The final challenge was the founding of Japan’s first NMOSD Patients Association.

Please describe in a few sentences how your art submission reflects your life with NMO

For me, singing is both a profession and an expression of my heart. In 2016, I was diagnosed and could no longer sing at all but I practiced little by little, and by the sixth year, I could even sing opera arias, and the practice for this has become my hope to live with NMO.

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