Posted by: The Sumaira Foundation in 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 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 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 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 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, Patient.e, Voices of NMO
这是一个有关中国NMO之家联合创始人小高从病痛中“站起来”，重新出发去寻找生命意义的故事。现在，他期待着NMO病友大会在中国举办，期待着与TSF共同用我们的努力照亮NMO和MOG患者的世界。他说他还会继续在NMO病友会的建设上走很远很远的路，直到医学领域发现治愈的光芒，直到病友们能摆脱疾病带来的痛苦，直到NMO和MOG病友们都能重新拾起对世界的热爱…
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