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Voices of NMO

Adam’s NMO Story – Narrated by The Love of His Life

My name is Jamie and I am Adam’s partner of 17 years. This is Adam’s NMO story from my perspective……

Adelaide & Joe’s NMO Story – A Husband & Wife Perspective

ADELAIDE Her mother, dying on the bed next to her, asked Adelaide for a sip of water. As Adelaide moved…

Adria’s NMO Story – Juggling Law & Autoimmune Diseases Like a Pro

Since she already had been diagnosed with lupus, Raynaud syndrome, and Sjogren’s syndrome, Adria didn’t think much about the tingling…

Allison’s NMO Story – Keep on Keepin’ On

My name is Allison and I am a married, busy mom of three children (17, 12 & 12 years old).…

Alyson’s NMO Story | All That Glitters Isn’t Gold

It began like a pain unlike any other. In 2009, and during my sophomore year of college, I was sitting…

Alyson’s Story – Silver Lining’s Playbook to NMO

With a vulnerable yet advocational heart, I would love to re-introduce myself to the NMO community! My name is Alyson…

Amanda’s NMO Story – Physical Strength Gets You to the Start Line; Mental Strength Gets You to the Finish

Back in 2013 and 2014, I completed two 100km walks to raise money for Oxfam – something I am so…

Angela’s NMO Story – From Managing Retail to Managing Vision Loss & Paralysis

I was diagnosed with NMO on March 10, 2015… An MRI that was done while I was receiving inpatient care…

Ann’s NMO Story – Not Letting NMO Stop Her

Ann and her husband were at the seaside, collecting seaweed to use in a kitchen garden they were digging. Ann…

AnneMarie’s NMO Story – Proof of my Strength

My name is AnneMarie and my journey with NMO began in 2002 when I was just 16 years old… One…

Arlena’s NMO Story – Still Breathing

I was a 26 year old working in the Pentagon in the Navy Executive Dining Facility. I was Active Duty…

Ashlee’s NMO Story – A Fighter for her Family

My name is Ashlee. Thank you for taking the time to read my story. I’m not really sure where to…

Bella’s NMO Story – In This Family, We Fight Together

August 29, 2017 will forever be embedded in my mind because it was the day my 9 year old daughter,…

Betty’s NMO Story – The NMO Monster

In October 2015, as I was traveling to Oklahoma to visit my sister, I developed a deep gray-teardrop-shaped spot in…

Brittany’s NMO Story – An Unsung Heroine

One morning in October of 2013, I remember feeling a sharp pain in my right eye when I would try…

Caryn’s NMO Story – Building A United Front

My NMO journey began in 2018. It was Martin Luther King Day. I was visiting my parents for the weekend.…

Catherine’s NMO Story – Life Is My Marathon

Life before NMO – I was an active mom, worked as a home health nurse case manager and an avid…

Chasity’s Story – It Started with a Headache

It started with a never-ending headache… Click the image below to watch Chasity’s video in which she describes her experience…

Chelsey’s NMO Story – Sister & Scientist

Chelsey Judge, PhD, is a scientist with a particular interest in immunology. She also happen to be the sister of…

Chelsey’s NMO Story – Vision Without Sight

In February 2019, I received an NMOSD diagnosis after nearly 11 years of being treated for multiple sclerosis… I think…

Christy’s NMO Story – Being Heard Makes All the Difference

My name is Christy and I’ve been fighting this disease without knowing what I was up against since before 2008……

Christy’s NMO Story – Conquering Every Day with NMO

My NMO story started about 15 years ago. I was a sophomore in high school and was just released for…

Clarinda’s NMO Story – My “Coming Out”

It all started with an itch at the back of my neck that continued for about three weeks without any…

Daniele’s NMO Story – MENINA CORAGEM (Courageous Girl)

I was diagnosed with Neuromyelitis Optica in June of 2012 after two hospitalizations totaling 5 months, during which I lost…

Danielle’s NMO Story – Sending Spoons

April Fools’ Day jokes are supposed to be funny. However, the one my parents thought I was playing two years…

Daniëlle’s NMO Story – Watch This Space

On the evening of Sunday, 17th January 2010, my mother was putting up a fight with my brothers and I…

Dazmine’s NMO Story – A Single Mother Living with NMO

In August 2019, while at work, I began to notice a change in my right eye. I thought it was…

Deanna’s NMO Story – Choosing Resilience

February 1st, 2011 – I began having vision problems in my left eye and a few days later, it got…

Deb’s NMO Story – Doctor, Do You Love Me?

The bad news is that apparently I’m about to die. The good news is that both my fantasy doctor boyfriend…

Dionne’s NMO Story – Journey to a Diagnosis

Meet Dionne, a vibrant 46-year old, former nurse, mother of 2 from New Orleans, Louisiana who has been living with…

Dominic’s NMO Story – Guided Through the NMO Storm

On December 25, 2018, we finally received answers and a diagnosis after Dominic became ill on November 19th with what…

Donna’s NMO Story – You Are Only Dealt What You Can Handle

It was March 2009. I was 39 years old. One morning, I woke up feeling significant pressure behind my left…

Dr. Farrah Mateen’s Story – A Global Perspective on NMO

Like many physician-researchers in my field, I spend a lot of time thinking about NMO, both inside and outside of…

Dr. Michael Levy’s NMO Story – A Physician’s Quest to Find a Cure

I was an on-call intern late one night at the Johns Hopkins Hospital when I met a young woman who…

Dr. Sara Mariotto’s Story – Bedside to Bench

I was a young resident at the University of Verona’s, Neurology Unit when I met a woman with rapidly evolving…

Dr. Tracey Cho’s NMO Story – Teaching Future Neurologists That NMOSD is a “Do Not Miss” Diagnosis

My name is Tracey Cho. I am a neurologist and a teacher. I specialize in autoimmune and infectious neurology, treating…

Dr. Weinshenker’s Story – Witnessing the Transformation of Neuromyelitis Optica

My name is Brian Weinshenker and I am a neurologist at the Mayo Clinic in Rochester, MN. I established a…

Eleanor’s NMO Story – A Lucky Beach Girl

Is it unreasonable to call a woman who comes down with a rare autoimmune disease lucky? What about two autoimmune…

Eliana’s NMO Story – My Blissful Tragedy

December of 2020 started perfectly. I recently accepted my first job offer after completing my undergraduate degree and anticipated my…

Elizabeth’s NMO Story – Mind over Matter

My life changed eleven years ago when I was diagnosed with NMO. To this day, I still have moments where…

Evannie’s NMO Story – You Never Know

You never know what someone’s going through. I have always been told this and I believe it. Still, I never…

Gerome’s NMO Story – Whatever It Takes

Three years ago, right in the middle of my medical internship, I was diagnosed with Seronegative NMOSD. I took a…

Greg’s NMO Story – Making the Choice to Thrive

According to all of his medical tests, Greg is negative for both multiple sclerosis (MS) and neuromyelitis optica (NMO). Like…

Hali’s NMO Story – No Disease Will Ever Wear Me Down

My name is Hali and I am a 19 year old Scottish Law student living with NMOSD. — It all…

Heather’s NMO Story – Always Fighting

I was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD) in November 2013. My symptoms started June of that year with…

Heather’s NMO Story – Determined to Overcome

Something Wasn’t Right I was the perfect example of the shiny student off to bigger and better things from the…

Het verhaal van Els – Leven met een zeldzame ziekte, NMOSD

Els is ambassadeur voor de Sumaira Foundation, die opkomt voor de belangen van mensen met NMOSD en MOGAD. Zelf kreeg…

Ilene’s NMO Story – Lessons Learned; Resilience Cultivated

I’m Ilene, the youngest of seven children. I come from a family of school teachers and musicians. I love board…

Iliana’s NMO Story – My NMO Diagnosis in Canada

Part I and II of this story were originally published in 2015 by NMO Stories, presented by The Guthy-Jackson Foundation…

Ireland’s NMO Story – A Voice for the Unsung

At age eight, when I first started chemotherapy for my autoimmune disease, the neurologist told my parents the maximum amount…

Isabella’s Story – A New Baby, a New Diagnosis, a New Life

While I was pregnant, I began having blurred vision. I went to see ophthalmologists, opticians, and general practitioners, but they…

Izabela’s NMO Story – A Lust For Life

May 15, 2021 – a date I’ll never forget, but I didn’t know then that it would change my life…

Jacqueline’s NMO Story – Scaling That Mountain

In February 2020, I started having weakness, numbness, burning, and pain on both sides of my body, starting with my…

Jaime’s NMO Story – Finding My Happy Place

My name is Jaime. I live in the small town of Exeter, Pennsylvania. I am a wife and a mother…

James’ NMO Story – Bumpy Road to a Diagnosis

Hello, my name is James. I am 24 years old. I am a recent college graduate, a skateboarder, a geek,…

Jamie’s NMO Story – Holding on, even if a little too tight…

Jamie was diagnosed with Non-Hodgkins Lymphoma at the age of 35. Her condition was such that she didn’t need treatment,…

Jarrie’s NMO Story – In Loving Memory of Donna

Jarrie grew up on a farm and declares himself a simple man. I think otherwise. I think Jarrie is a…

Jason’s NMO Story – Advocacy and Awareness Saves Lives

Modern medicine in the United States was a complete failure. For six weeks, the hospitals, doctors, and many lab tests…

Jean’s NMO Story – A Modern Medical Miracle

Sunday 15 December 2013, on a friend’s farm in the beautiful little town of Dullstroom in Mpumalanga South Africa, started…

Jeanette’s NMO Story – Surviving Since Birth

My name is Jeanette McCourt from Arizona and I was diagnosed with Neuromyelitis Optica on June 1, 2016. This diagnosis…

Joanna’s NMO Story – The Differential Diagnosis

The differential diagnosis: It is a skill we learn early in medical school and it is designed to guide the…

Joyce’s NMO Story – I Am An NMO Warrior

Hello! My name is Joyce and I am from Pittsburgh, Pennsylvania. My NMO symptoms started with loss of bladder control,…

Julie’s NMO Story – Tingles & Tinkles

Five years ago, my oldest daughter and I were grocery shopping when it occurred to me that the grocery store…

Julie’s NMO Story – Transforming Curses Into Blessings

Julie has had NMO for at least a dozen years. From before and since that time, she has been…

Kailee’s Story – My NMO Diagnosis

My name is Kailee. I am a mom, wife, daughter, teacher, dance instructor, and I have neuromyelitis optica spectrum disorder…

Katy’s NMO Story – The Making of a Warrior

This is a story of how a warrior is made. I have been gifted with the job of being this…

Kayla’s NMO Story – Don’t Just Turn It On, Turn It Up

It all began in early 2020 when Kayla noticed a tingling sensation in her right leg. She didn’t think too…

Kellin’s NMO Story – One Step at a Time; The Journey Starts Here

My name is Kellin. I am a 28-year-old South African NMO patient and this is my story… Late in 2015,…

Kelly Ann’s NMO Story – Saving My Own Life

Meet the happy workaholic, Kelly Ann, an ambitious business + LinkedIn coach, podcaster and luxury brand consultant from California who…

Keri’s NMO Story – New Baby & New Diagnosis

I have never been a person that likes to sit still; I don’t even like going to the movies. If…

Kia’s NMO Story – Deciphering my Diagnosis

The Diagnosis My NMO journey started after my 29th birthday in January 2016. I had a headache that would not…

Kristen’s NMO Story – Changed for the Better

I am no stranger to rare diseases. At 17, I was diagnosed with Toxoplasmosis. At 22, Phyllodes tumors. Chiari Malformation…

L’histoire NMO d’Elodie – Ma NMO, Mon Histoire

Bonjour à tous, je m’appelle Elodie. J’ai prochainement 37 ans. J’habite à Orp-Jauche, Brabant wallon, Belgique. En 2008, j’ai fait…

L’histoire NMO de Bérengère – Dans l’errance

Je m’appelle Bérengère, j’ai une maladie rare appelée NMOSD. 2001: J’ai 21 ans, bientôt 22, et tout va bien dans…

L’histoire NMO de Marie-Claude – Une Cohabitation avec une Maladie Rare

Le 6 octobre 2014, le jour où ma vie a pris une nouvelle voie pour poursuivre son chemin. Le jour…

L’histoire NMO de Fatiha – Renaissance après NMO

Bonjour à tous, je m’appelle Fatiha. J’habite à Étalleville en Normandie. Je suis tombée malade le 20 février 2016. Date…

Leah’s NMO Story – Resilience Through Life’s Interruptions

Before I begin, I would like to thank you and tell you how much I appreciate you taking the time…

Leda’s NMO Story – I Want to Live While I Live!

A native Portuguese speaker and resident of Denmark, Leda wrote her story in English, Portuguese, and Danish. Please scroll down…

Lelainia’s NMO Story – 30 Years with the Wrong Treatment

I can trace my first NMO symptoms back to when I was just 12 years old… I’d be walking down…

Letitia’s NMO Story – Strength Gained from the Madness Survived

My name is Letitia and I am a 22-year-old South African NMO patient. My story began on the 26th of…

Lexi’s NMO Story – Shaping My Identity

Freshman year of college is a time to form your sense of identity, but when I started school, I thought…

Lillian’s NMO Story – Living For Her Family

She thought she had a bad sunburn… Lillian had gone camping with her daughter and her Girl Scout troop in…

Maggie’s NMO Story – Finding Miracles in the Micro-Moments

I am a caregiver to my daughter, Nell, who was diagnosed with NMO at age 9. Prior to her diagnosis,…

Mamiko’s NMO Story – Opera, NMO and New Adventures

Born and raised in Tokyo, Mamiko Sakaida always loved singing and wanted to become an opera singer. In pursuit of her making…

Marc’s NMO Story – Me, Myself and NMO

It started innocuously. In 2008 we moved to Ottawa with my employer for my career in pest control. On a…

Marie’s NMO Story – Stronger Than You’d Know

Nothing can fell Marie. No matter the punches that NMO throws, Marie just gets up again and keeps on going.…

Marie’s NMO Story – Welcome to Chapter 2

Hello. Hola. My name is Marie and I am proud to be the Welcome Manager for The Sumaira Foundation. I…

Mary Lou’s NMO Story – Learning & Sharing NMO

My name is Mary Lou Gallegos. I was born and raised in San Antonio, Texas. I am the co-owner/founder…

Matt’s NMO Story – Driven for His Daughter

With respect to the patient’s desire to remain anonymous, we will refer to him as Matt. It started along with…

Matthias’ NMO Story – The Gift of Support

The first time NMO hit me was on the evening before Thanksgiving in 2010… I clearly remember it because my…

Maureen’s NMO Story – NMO & My Life

This disease began with hiccups and vomiting 25+ times a day. I was certain that I had gotten food poisoning…

Maureen’s Story – Experiences From the Bedside & Research

Maureen is a nurse. She worked in neurocritical care at Johns Hopkins Hospital for many years before she had ever…

Maurita’s NMO Story – Working Hard & Working Through

She thought it might be her fault. After all, she was working 14-hour days driving a truck, going to school…

Megan’s NMO Story – Coping via Cosmetics

Meet Megan, a 16 year old NMO patient who and YouTube sensation (@PerfectlyKnitBeauty) who has been coping with her chronic…

Megan’s NMO Story – Your Average Girl Living in a Chronic Illness World

My biggest fear in life was that I would have some incurable sickness or disease. Not heights, nor spiders, nor…

Mileidys’ NMO Story – It May Not Be Easy, But It Is Not The End

I was born and raised in Cuba where I played outside, ran, and enjoyed time with my friends. In my…

Mitchel’s NMO Story – Stronger Than Strong

My name is Mitchel Navarro. I’m 34 years old, a wife, and a proud momma to two beautiful children –…

Nell’s NMO Story – My Hospital Story

My first NMO symptoms hit three years ago when I was 9; I’m 12 now. To be fully transparent, I…

Nick’s NMO Story – A Mother’s Perspective

In early November 2000, Nick came down with viral symptoms. He was just done eating dinner when he vomited across…

Nicki’s NMO Story – Taking on NMO One Day at a Time

While 2018 came ringing in with optimism, I was back in school getting my business degree and making moves to…

Nicole’s NMO Story – A Woman Who Never Stopped Trying

Nicole was a first-grade teacher and chorus director in a Title 1, low-income school district, where she was a beloved,…

Noelani’s NMO Story – Ignition

Hi, my name is Noelani. I am 30 years old, was born and raised in Hawaii but currently reside in…

Paige’s NMO Story – A Baby & A New Diagnosis

My NMO journey started just a few weeks after having my first baby girl in August 2020. Being a first…

Pam’s NMO Story – How NMO Reinforced Positivity

On Monday morning, Pam had a headache. For a woman who never got headaches, this was notable. In addition, when…

Patty’s NMO Story – Is It MS or Could It Be Something Else?

I was 33 years old in 1993, when I experienced a sudden attack of optic neuritis, an inflammation that damages…

Paula’s NMO Story – A Walking Miracle

Paula is a walking miracle. She looks good, feels good and can do most everything she ever did in…

Pauline’s NMO Story – A Nurse’s Instincts

My name is Pauline Richardson nee Grant. I grew up on a farm in Jamaica. My mom, being a cheerful…

Phil’s NMO Story – A Journey to a Diagnosis

Here is my story of how I was diagnosed with Neuromyelitis Optica and just how scary it can be knowing…

Preethi’s TM Story – Hope Forever Prevails

I am Preethi, residing in Coimbatore, famously known as the Manchester of South India. This narrative is a chronicle of…

Ria’s NMO Story – Stronger Than You Know Fighting NMO

Recently, Ria’s mother’s blood pressure climbed dangerously high. Her father is scheduled for a triple bypass later this week. It’s…

Robin’s NMO Story – Living in the Moment with NMO

I was diagnosed with Neuromyelitis Optica on July 25, 2015. My story is a little different than many of the…

Ron’s NMO Story – NMO & Me

Today this is where I am – right here and right now. God has a plan, yesterday is gone and…

Ronae’s NMO Story – God & NMO

It was December 2019. I struggled almost every day with tension headaches (eyes and nose). My primary care doctor suspected…

Rosa’s NMO Story – NMO Across Borders

On April 29, 1984, I landed at Boston’s Logan Airport with two suitcases and a seven-year-old girl holding my hand.…

Roxy’s Story – Denial, Disbelief, and Disability

Hello fellow NMO sisters and brothers. My name is Roxana aka “Roxy”. I was diagnosed with NMO in June 2011…

Ryan’s NMO Story – NMO is my New Normal

My name is Ryan. Three years ago, I was living the dream. I was happily married to my best friend,…

Savannah’s NMO Story – I’m Done Apologizing for Not Showing Up

I have a rare, chronic neurological disease that affects my central nervous system. It’s caused me to become temporarily half-blind…

Shanice’s NMO Story – Caffeine Withdrawal or Something Serious?

My name is Shanice. I was born and raised in Jamaica and now reside in Toronto in Canada. I am…

Shantrice’s NMO Story – A Fear You Just Can’t Break

It all started when I was 20 years old – I went to urgent care because I was experiencing excruciating…

Sherry’s NMO Story – From Caregiver to Needing the Care

My name is Sherry. My experience with my disease is a little different and backwards… I was taking care of…

Shiela’s NMO Story – Battling NMO in the Philippines

Greetings Everyone, I’m Shiela Marie Sta. Maria Rutaquio, from Binangonan, Rizal 1940 Philippines, who have this rare and incurable autoimmune…

Sinead’s NMO Story

I was 7 years old and after a normal school day, I noticed blurred vision in my left eye. As…

Sofia’s NMO berättelse – Alltid en väg framåt (Always a Way Forward)

The year was 2007 and I had just returned to school from summer break, twelve years old and excited to…

Sonali’s NMO Story – The Best Laid Plans

When you and God have different plans, stories like ours get created. My name is Sonali Tambatkar and I live…

Storia NMO di Elena – Ciao Bella!

Nel mese di marzo 2012 avevo appena trovato lavoro a più di 60 chilometri da casa ma era il lavoro…

Sumaira’s NMO Story (from The Transverse Myelitis Association Blog – In Their Own Words”)

Sumaira’s NMO Story From the Transverse Myelitis Association blog, In Their Own Words (October 4, 2018) My name is Sumaira and…

Tamanika’s NMO Story – It Takes A Village

Tamanika Zinger was on her first date with her now husband, 16 years ago when she experienced her first symptoms…

Tanishia’s NMO Story – As Told By Her Sister

Neuromyelitis Optica – a rare disease that appeared out of the blue and had a mission to suck the life…

Theresa’s NMO Story – Facing One Day at a Time…

Imagine this: You’re driving on a highway, and suddenly, your hands stop working completely. You can’t grip the wheel. Imagine…

Therese Burke’s Story – IMPROVING CARE THROUGH PATIENT PARTNERSHIPS

It was over a decade ago, but I remember it like yesterday, the first patient I looked after with NMOSD.…

Tiffany’s NMO Story – Navigating the Navy with NMO

Tiffany was a military brat with both of her parents serving in the Navy, so joining up herself seemed the…

Veronica’s NMO Story – NMO Benched Him but Faith Keeps Him Swinging #MayberryStrong

My name is Veronica and this is my NMO story. I am not a patient but a mother/caregiver of an…

Yaracelly’s Voces de NMO – DE FISIOTERAPEUTA A PACIENTE

Mi nombre es Yaracelly Gaona, soy panameña, estoy casada, tengo 35 años y una hija de 7 años. A mis 28 años, días…

小高的NMO之路 (Xiao Gao’s NMO Story)

这是一个有关中国NMO之家联合创始人小高从病痛中“站起来”，重新出发去寻找生命意义的故事。现在，他期待着NMO病友大会在中国举办，期待着与TSF共同用我们的努力照亮NMO和MOG患者的世界。他说他还会继续在NMO病友会的建设上走很远很远的路，直到医学领域发现治愈的光芒，直到病友们能摆脱疾病带来的痛苦，直到NMO和MOG病友们都能重新拾起对世界的热爱…

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