In My Words | Sandra Adda

“When you come out of the storm, you won’t be the same person who walked in. That’s what the storm is all about.”- Haruki Muraki

For Sandra, NMO patient advocacy is not a job, or a chore, it is a way of life. Her illness has deepened both her resilience and her compassion. She loves helping others achieve their full potential.

A native of New York, Sandra has spent most of her life in Florida. Before her life-changing diagnosis, she was an extremely successful senior sales marketing associate. She was at the height of her career and then abruptly, everything changed in 2009. Burning fire like pain in her rib cage and numbness in her leg came on quickly while Sandra was traveling. Her diagnostic journey was exhaustingly long and began with the misdiagnosis of MS. The initial treatment for MS seemed to stop the severity of her symptoms and Sandra put in the tremendous effort of returning to work. It was not until a severe relapse eleven months later through multiple MRIs and the then new biomarker lab test for the Aqp4-antibody, that Sandra learned her true diagnosis was NMO, Neuromyelitis Optica.

Sandra has been a leader and advocate in the NMO community since attending her first GJCF Patient Day in 2009 and is a Charter Member of The Guthy-Jackson Charitable Foundation’s Patient Advocacy Council, joining the first group of volunteer advocates in 2021. She continues to work tirelessly to support the NMO Community and facilitates an online support group focused on education, community, and connection for patients and caregivers living with rare and neuroimmune diagnoses. Register for Sandra’s monthly online Support Group here: The Guthy-Jackson Foundation | Facebook, TikTok | Linktree

1 Comment

  1. Elsa no Quevedo on August 18, 2024 at 1:36 am

    NMO. seronegativa. Bogota Colombia mi

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