Posted by: The Sumaira Foundation in MOG, NMO, Patient.e, 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 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 NMO, Voices of NMO
Året var 2007, och jag hade precis kommit tillbaka till skolan efter sommarlovet, tolv år gammal och taggad på att börja högstadiet med nya vänner och nya möjligheter! Terminen började bra, och jag fick många nya vänner som jag hade hoppats. Men bara några få veckor efter terminsstart började jag få ont i mitt högra […]
Read MorePosted by: The Sumaira Foundation in NMO, Proche-aidant.e, Professionnels de santé, Voices of NMO
I am a caregiver to my daughter, Nell, who was diagnosed with NMO at age 9. Prior to her diagnosis, she was an active, vibrant girl playing travel lacrosse, robustly healthy and energetic. Then out of nowhere, she developed nausea and dizziness, which was thought to be a nonspecific virus, but when it persisted and […]
Read MorePosted by: The Sumaira Foundation in Nouvelles et annonces
June 14, 2023 — The Sumaira Foundation (TSF), a global patient advocacy organization focused on rare neuroimmune conditions, is delighted to announce Tim Walbert, chairman, president and chief executive officer of Horizon Therapeutics, as TSF’s Inaugural Global Rare Trailblazer Award recipient. The award was announced at the 6th Annual TSF Gala, recently held in Boston […]
Read MorePosted 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 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 Media & Press, Nouvelles et annonces
“You have to grab life by the horns and enjoy every moment. Even if you’re not ill, you should do that!” April 7, 2023 — The Sumaira Foundation’s (TSF) first original short film NMO, Bonjour! has been selected into the official final shortlist at the World Health Organization’s 4th Health for All Film Festival, 2023. […]
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
My NMO journey began in 2018. It was Martin Luther King Day. I was visiting my parents for the weekend. When I got up in the morning, I remember looking around and thinking everything looked so foggy. When I closed my left eye and looked out of my right eye, all I could see was […]
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