Posted by: The Sumaira Foundation in Nouvelles et annonces
28 février 2023 – The Sumaira Foundation (TSF) annonce la création et le lancement de TSF France, apportant un soutien supplémentaire indispensable à la communauté française touchée par la NMO et la MOGAD. La Fondation Sumaira (TSF), organisation mondiale à but non lucratif dirigée par des Patients, est heureuse d’annoncer son essor en Europe avec […]
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
Le 6 octobre 2014, le jour où ma vie a pris une nouvelle voie pour poursuivre son chemin. Le jour où j’ai commencé une cohabitation avec une maladie rare… À cette date, à 36 ans, la partie supérieure de mon œil gauche commence à voir de façon embrouillée. Six jours plus tard, mon œil ne […]
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
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 ma première poussée. Une nevrite optique. A l’époque, j’avais été aux urgences ophtalmologiques dans un grand hôpital à Bruxelles. L’ophtalmologue sur place m’a parlé directement d’une sclérose en plaques. Diagnostic qui n’avait pas été confirmé […]
Read MorePosted by: The Sumaira Foundation in MOG, NMO, Professionnels de santé, Voices of NMO
I was a young resident at the University of Verona’s, Neurology Unit when I met a woman with rapidly evolving extensive myelitis. I first thought about NMOSD and asked our laboratory to analyse her serum for anti-AQP4. I performed the spinal tap and asked for an infectious and autoimmune screening, but the analyses were within […]
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
Every day we wake up, we surely never expect our day to end with everything turned upside down – and our life changed forever. But it is exactly what happened to me in 2013 after being diagnosed with an autoimmune condition that could likely leave me blind, paralyzed, or worse… “You have ten years,” the […]
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
Hi, my name is Noelani. I am 30 years old, was born and raised in Hawaii but currently reside in Nevada! Looking back, there were signs throughout my childhood of NMO, bowel/urinary incontinence, spurts of tingles, and needles in my extremities. In my early teens, I had episodes of numbness in my left arm and […]
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