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 […]
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Je m’appelle Rokhaya Gningue, maman d’un beau jeune homme de 18 ans. Originaire du Sénégal, je réside actuellement au Québec. En 2009, j’ai reçu un diagnostic de sclérose en plaques, mais je découvre plus tard que j’avais plutôt une NMOSD en 2021. Le diagnostic a été confirmé au Canada en 2023. Au Sénégal, des maladies comme […]
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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 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 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
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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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 […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
It all started with an itch at the back of my neck that continued for about three weeks without any sign of a rash or anything that could be causing it. Then suddenly everything went awry – the weight of a single strand of hair on my neck felt unbearable, the shower felt cold on […]
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