Posted by: The Sumaira Foundation in MOG, Patient.e, Voices of Early Radio, Voices of NMO
La MOGAD est entrée dans ma vie sans prévenir. Au début, c’était presque rien. Une petite tache noire dans mon œil droit, en mai 2022. Je pensais que ça passerait. Mais ce n’est pas passé. Très vite, tout s’est accéléré : examens, IRM, hospitalisation, bolus de corticoïdes. On a parlé de névrite optique. On a […]
Read MorePosted by: The Sumaira Foundation in MOG, NMO, Patient.e, Voices of Early Radio, Voices of NMO
Bonjour, je m’appelle Natasha, j’ai 46 ans, et voici comment la NMOSD (neuromyélite optique) est entrée dans ma vie. Tout a commencé à l’été 2001. J’avais 23 ans et je ressentais des décharges électriques dans les doigts. Ce n’était pas douloureux, mais très gênant, et au fil des mois, mes doigts sont devenus engourdis. À […]
Read MorePosted by: The Sumaira Foundation in MOG, Patient.e, Voices of Early Radio, Voices of NMO
Je m’appelle Nelly, j’ai 44 ans et je vis dans un joli village dans l’Oise et j’ai la MOGAD. Sans le savoir cette maladie m’avait déjà fait un petit clin d’œil en septembre 2006. J’avais été hospitalisée à l’époque 1 semaine avec un traitement de corticoïdes pour une suspicion de sclérose en plaques suite à […]
Read MorePosted by: The Sumaira Foundation in MOG, Proche-aidant.e, Voices of NMO
Drogi Czytelniku – chciałabym podzielić się z Tobą naszą bardzo osobistą historią, która zmieniła życie moje i mojego męża. Bardzo bym chciała, żeby nasza historia była dla Ciebie przykładem nadziei i motywacji, abyś się nigdy nie poddał w poszukiwaniu ludzi, którzy będą mogli Ci pomóc i będę Twoim wsparciem. Bądź otwarty, pytaj i proś o […]
Read MorePosted by: The Sumaira Foundation in MOG, Patient.e, Voices of NMO
On Monday, I woke up with a slight ache on the left side of my lower back which felt numb, like a bruise but without the pain. This numb spot would spread across my chest in the following days and become stronger. I woke on Thursday morning with pins and needles in both legs and […]
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 MOG, NMO, Professionnels de santé, Voices of NMO
It was over a decade ago, but I remember it like yesterday, the first patient I looked after with NMOSD. Actually, there were two of them in the same neuroimmunology clinic. Both patients had a profound effect on me and have continued to influence other decisions I have made in my career since that time. […]
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 MOG, Patient.e, Voices of NMO
It all began with a tremor. It was September 2018, and I was off on maternity leave after having my second daughter earlier that year. As nice as that should have been, I was probably at one of the lowest points in my life. I’d been diagnosed with post-natal depression a few months earlier. In […]
Read MorePosted by: The Sumaira Foundation in MOG, Proche-aidant.e, Voices of NMO
My beautiful 4-year-old (5 years old now) daughter Jaidyn woke up one morning in late April 2021 with a headache, fever, vomiting, and very lethargic. Her grandmother and I took her to the ER, thinking she simply had a virus and needed some fluids… that’s when our world turned upside down. Jaidyn’s headaches were getting […]
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