UNSTOPPABLE STORIES

Making connections and learning from others is so important when you live with or care for someone with a rare disease like neuromyelitis optica spectrum disorder (NMOSD).

Through this collection of unstoppable stories, people in the NMOSD community share their challenges, triumphs and how they advocate for their own or their loved one’s health.

Christine’s Story

Christine was born an only child in Los Angeles to parents who emigrated from Saigon following the Vietnam War. In 2003 at 23 years old, she was diagnosed with NMOSD and began losing her vision. By 2007, she was almost completely blind. Over the next several years, Christine retaught herself how to cook and found ways to continue doing the things she loves.

Kayla’s Story

Like many in their 30s, Kayla was enjoying her life and planning her upcoming wedding. It was at this time she experienced her first NMOSD attack that left her numb from the waist down, making it difficult to walk. Over the next seven months, she connected with many doctors for an accurate NMOSD diagnosis. By the end of 2020, Kayla relied on her electric wheelchair to get around. Since then, she has found new ways to keep doing the things she loves, like photography and being outside in nature.

Kim’s Story

Kim started to lose sight in one eye in 2020. Over the next six months, she continued experiencing symptoms and searched for an accurate diagnosis that would lead to her eventual diagnosis of NMOSD. As a mother, active member of her church and sorority as well as a second degree black belt in taekwondo, Kim hasn’t let NMOSD stop her. 

Frank’s Story

Frank is not just Kim’s husband; he’s also a father and pastor. Despite Kim’s NMOSD diagnosis in 2020, they have continued to travel, watch movies and go to concerts together. While Frank thinks of Kim as his Wonder Woman, he has always been there for her through the challenges and struggles of living with NMOSD. And in many ways, Kim has been there for Frank, too.

Doug’s Story

Doug experienced paralysis in his legs that he first thought to be the start of multiple sclerosis, a disease that his two siblings have. After additional testing, he was diagnosed with NMOSD in 2017. Over the next several months, he leaned on the support of his wife and caregiver, the doctors, nurses and aides as he relearned to walk. He drew strength from others and found a way to continue enjoying his life on his own terms. 

Holly’s Story

Married for over 30 years, Holly has been by Doug’s side through five children, even more grandchildren and travels around the world. Her world changed when Doug was diagnosed with NMOSD in 2017, but she still continued to be Doug’s best friend, partner and support system as they navigated his diagnosis and treatments. Since then, they’ve continued their commitment to each other and their family, while also finding new friends in the NMOSD community.

Ireland’s Story

Ireland’s childhood was different from most of her peers. She was diagnosed with NMOSD at eight years old and continued to have relapses until the age of 10, which left her partially blind. But that didn’t stop her from teaching herself to drive, graduating summa cum laude with her associate degree and continuing her education in medical sociology and creative writing. 

Brooke’s Story

Brooke was met with an unprecedented challenge when her daughter Ireland started experiencing NMOSD symptoms at just six years old. Seeing Ireland’s strength as she navigated NMOSD, Brooke fought hard as a mother and care partner to ensure Ireland received the best medical care. Brooke was with Ireland during every part of the journey — while juggling a career, home and family.

More Stories From NMOSD Patient Advocacy Groups

Guthy-Jackson Charitable Foundation

NMO Stories

People and care partners of all ages and backgrounds talk about their experience with NMOSD in these short videos and stories.

open_in_newCHECK OUT THEIR STORIES

The Sumaira Foundation

Voices of NMO

Care partners, those living with NMOSD and professionals share detailed stories about how NMOSD has affected their lives. You can also submit your story.

open_in_newREAD PERSONAL STORIES

Learn About the Power of Self-Advocacy

Simple steps, like being vocal and reaching out to your doctor, can help you play a more active role in your health.

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Find Helpful
Resources

From mental health advice to financial support, check out resources that can help you take control of your journey with NMOSD.

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