Posted 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
I was born and raised in Cuba where I played outside, ran, and enjoyed time with my friends. In my healthy teen years, I didn’t think I’d ever become chronically sick, much less, stop walking. I remember watching a movie about a boy named Lorenzo who suffered from a degenerative neurological disease that causes paralysis. […]
Read MorePosted by: The Sumaira Foundation in MOG, Patient.e, Voices of NMO
Clean and clear were my glasses but still I had trouble seeing clearly with my right eye. On Easter Monday in 2019, my vision deteriorated and by the end of the week, I was admitted to the hospital. I was feeling sick with almost no vision left in both eyes, experiencing painful eye movements and […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
A native Portuguese speaker and resident of Denmark, Leda wrote her story in English, Portuguese, and Danish. Please scroll down to read Leda’s story in Portuguese and/or Danish. In 2018 my life was peaking. My family was doing well. I had the most amazing job and spent my spare time teaching Zumba classes, boxing, and […]
Read MorePosted by: The Sumaira Foundation in Nouvelles et annonces
March 10, 2022 – The Sumaira Foundation (TSF) is pleased to announce the launch of “Imagine My Life With NMO,” a video series showcasing the experiences of people living with neuromyelitis optica (NMO) around the world. The series follows Sumaira Ahmed, TSF founder, as she interviews patients, their loved ones and doctors to understand 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
My name is Pauline Richardson nee Grant. I grew up on a farm in Jamaica. My mom, being a cheerful giver, would invite people over all the time, always making sure they were well fed. My parents instilled in us strong values, the importance of family, faith, and community. My parents’ caring and compassionate attitude […]
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 […]
Read MorePosted by: The Sumaira Foundation in NMO, Proche-aidant.e, Voices of NMO
Jarrie grew up on a farm and declares himself a simple man. I think otherwise. I think Jarrie is a man for whom love is simply enough. Jarrie married his high school sweetheart, Donna, on Valentine’s Day in 1975. She died on New Year’s Day in 2021. Donna’s health began to deteriorate when she contracted […]
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