Posted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Nel mese di marzo 2012 avevo appena trovato lavoro a più di 60 chilometri da casa ma era il lavoro per il quale avevo appena terminato gli studi ed ero determinata a fare il tragitto ogni giorno della settimana per andare in quel paesino di mare dove vivevano Alessandro, un ragazzo sordo dalla nascita ed […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
In February 2020, I started having weakness, numbness, burning, and pain on both sides of my body, starting with my feet but rapidly progressing to the rest of my body. When I would bend my head to look down, it would cause electrical vibrations down my body. My balance and coordination were completely off… I […]
Read MorePosted by: The Sumaira Foundation in NMO, Proche-aidant.e, Voices of NMO
Modern medicine in the United States was a complete failure. For six weeks, the hospitals, doctors, and many lab tests couldn’t piece a single clue together… It was 2018, and my fiancé had been to the doctors multiple times and was turned away from the ER three separate times. She was told she had the […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Els is ambassadeur voor de Sumaira Foundation, die opkomt voor de belangen van mensen met NMOSD en MOGAD. Zelf kreeg ze begin 2022 de diagnose van NMOSD. Ik werd in januari 2022 opgenomen in het ziekenhuis met een oogzenuwontsteking. Vervolgens deden ze in het ziekenhuis een test die nagaat of er antistoffen in het bloed […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Bonjour à tous, je m’appelle Fatiha. J’habite à Étalleville en Normandie. Je suis tombée malade le 20 février 2016. Date anniversaire de la mort de mon père. Une double peine pour moi. Mon premier symptôme: une paralysie du côté gauche. J’ai été hospitalisée et mon état s’est dégradé très vite. J’ai perdu la vue, j’ai […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Hello fellow NMO sisters and brothers. My name is Roxana aka “Roxy”. I was diagnosed with NMO in June 2011 when I was 17 years old. The first symptom I experienced was weakness in my right ankle. I woke up one day and my ankle couldn’t sustain my weight. I thought I hadn’t slept well […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
While I was pregnant, I began having blurred vision. I went to see ophthalmologists, opticians, and general practitioners, but they kept saying nothing was wrong. I was sent to see a neurologist at a public hospital, but there were long wait times. Knowing I needed answers, I chose to go to a private hospital. The […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Part I and II of this story were originally published in 2015 by NMO Stories, presented by The Guthy-Jackson Foundation and the Connor B. Judge Foundation. It was shared again on November 14th, 2019 in In Their Own Words by SRNA (Siegel Rare Neuroimmune Association). Part I Sometimes I think I could write a book about my story with NMO… […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
December of 2020 started perfectly. I recently accepted my first job offer after completing my undergraduate degree and anticipated my start date in the new year… In the second week of the month, I fell ill to what I thought was the stomach flu. I was soon rushed to the hospital after extreme nausea refused […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
My name is Hali and I am a 19 year old Scottish Law student living with NMOSD. — It all began in August 2021 when I developed a rash on the left side of my neck. It caused extreme nerve pain in the brain when touched the area and would trigger shaking spasms. I then […]
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