Posted 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
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 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 NMO, Patient.e, Voices of NMO
My name is Christy and I’ve been fighting this disease without knowing what I was up against since before 2008… I started calling this thing my “venom” because it reminded me of a venomous character that took over my entire being without letting go. My venom’s name is NMOSD (neuromyelitis optica spectrum disorder). It relentlessly […]
Read MorePosted by: The Sumaira Foundation in Nouvelles et annonces
November 22, 2021 – The Sumaira Foundation is pleased to welcome Professor Romain Marignier as the 1st international NMO specialist to join TSF’s medical advisory board. Romain Marignier, MD Pr. Romain Marignier is a neurologist (MD), professor at the Neurological Hospital of Lyon, France. His areas of expertise include neuro-inflammatory disorders of the central nervous […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, TM, Voices of NMO
On the evening of Sunday, 17th January 2010, my mother was putting up a fight with my brothers and I to go to bed while we were chasing each other through the house. We had school the next day; I was 12 years old at the time. At 4am the next morning, I woke up […]
Read MorePosted by: The Sumaira Foundation in NMO, ON, Patient.e, Voices of NMO
My name is AnneMarie and my journey with NMO began in 2002 when I was just 16 years old… One April morning, I woke up with a stabbing pain in my lumbar spine which was getting progressively worse. My mom rushed me to the local emergency room where they had taken x-rays and done bloodwork. […]
Read MorePosted by: The Sumaira Foundation in MOG, NMO, Professionnels de santé, TM, Voices of NMO
Maureen is a nurse. She worked in neurocritical care at Johns Hopkins Hospital for many years before she had ever heard of NMO. But in 2007, shortly after Dr. Benjamin Greenberg joined the faculty at Johns Hopkins, he recruited her to work with him in neuroimmunology. It was there that she first came into contact […]
Read MorePosted by: The Sumaira Foundation in MOG, ON, Proche-aidant.e, Voices of NMO
Virginia was only 10 when, while checking the mail one day in April, she noticed a grayness in her vision, “like leaves creeping up from the bottom of my eye.” The strange phenomenon went away in a few minutes. Her mother, Kimberlie, attributed the problem to Virginia’s allergies. But when the vision problem returned, they […]
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