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VOIX DE NMO
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L’histoire de Rokhaya – Au-delà du Diagnostic : Un Parcours Résilient et un Combat Quotidien face à la NMO
Je m’appelle Rokhaya Gningue, maman d’un beau jeune homme de 18 ans. Originaire du Sénégal, je réside actuellement au Québec. En…
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…
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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…
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…
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…
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…
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…
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…
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…
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.…
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…
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…
Sofias NMO berättelse – Alltid en väg framåt
Året var 2007, och jag hade precis kommit tillbaka till skolan efter sommarlovet, tolv år gammal och taggad på att…
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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