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Posted by: The Sumaira Foundation in MOGAD, Patient, Voices of TSF
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. […]
Read MorePosted by: The Sumaira Foundation in NMOSD, Patient, Voices of TSF
Before September 2024, my life was full of movement. I was the kind of person who rarely sat still – playing pickleball, skiing in the winter, walking my dogs. Willow […]
Read MorePosted by: The Sumaira Foundation in Myasthenia Gravis (MG), Patient, Voices of TSF
Mi chiamo Adalgisa, ho trent’anni e nel 2023 ho scoperto di avere la Miastenia Gravis: una malattia neuromuscolare cronica e autoimmune che provoca debolezza muscolare. Da quel momento penso sempre […]
Read MorePosted by: The Sumaira Foundation in Autoimmune Encephalitis (AE), Patient, Voices of TSF
In 2023, I was preparing to go to Washington, DC for Rare Disease Week as a Young Adult Rare Representative (YARR) with the EveryLife Foundation for Rare Diseases. I had […]
Read MorePosted by: The Sumaira Foundation in NMOSD, Patient, Voices of TSF
Nací en Armenia, una ciudad muy pequeña en Colombia. A los 16 años me fuí a Bogotá, la capital, a estudiar estadística en la universidad. Luego me fui a Holanda […]
Read MorePosted by: The Sumaira Foundation in NMOSD, Patient, Voices of TSF
Hola mi nombre es Anayansi, soy de Panamá y esta es, Mi historia, contada desde mi experiencia. Mi historia de salud empezó muy joven. A los 16 años me diagnosticaron […]
Read MorePosted by: The Sumaira Foundation in CNS Vasculitis, Patient, Voices of TSF
My name is Vanessa, I’m living with CNS vasculitis—and thriving. It’s been a journey marked by uncertainty, grit, and an incredible team of specialists who’ve helped me navigate this rare […]
Read MorePosted by: The Sumaira Foundation in Caregiver, MOGAD, Voices of TSF
Questa è la prima volta che racconto pubblicamente la nostra storia. Finora è rimasta in poche parole sussurrate. Ma oggi, dopo più di un anno, sento che è arrivato il […]
Read MorePosted by: The Sumaira Foundation in NMOSD, Patient, Voices of TSF
Hola, soy Gabriela Milagros, me suelen decir “Mily” Cuando fui muy pequeña lamentablemente viví en un entorno no muy agradable, perdí a quien yo consideraba mi madre, mi abuelita con […]
Read MorePosted by: The Sumaira Foundation in NMOSD, Patient, Voices of TSF
¿Alguna vez has tenido uno de esos sueños en los que, por más que corres, no avanzas? Bueno, pues así es como me he sentido durante los últimos tres años. […]
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