Posted by: The Sumaira Foundation in NMO, ON, Patient.e, Voices of NMO
It was March 2009. I was 39 years old. One morning, I woke up feeling significant pressure behind my left eye. I felt it mostly in the right corner of my eye, but assumed it would go away as quickly as it came. After a day or two, I thought it could be a sinus […]
Read MorePosted by: The Sumaira Foundation in Proche-aidant.e, TM, Voices of NMO
Addison “Addie” Havens was a healthy two year-old little girl full of energy and spunk who loved to play with her big brother… The weekend of January 29, 2016 began like any other but shortly after, Addie came down with a fever. We monitored it and were able to keep the fever down with Tylenol. […]
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 […]
Read MorePosted by: The Sumaira Foundation in NMO, Proche-aidant.e, Voices of NMO
On December 25, 2018, we finally received answers and a diagnosis after Dominic became ill on November 19th with what we thought was a bug that was going around his school… He was taken to Children’s Hospital twice in one week because he wasn’t getting any better with his symptoms. A couple of days passed […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, TM, Voices of NMO
I was 33 years old in 1993, when I experienced a sudden attack of optic neuritis, an inflammation that damages the optic nerve causing vision loss. A small black dot, obstructing the vision in my left eye turned into complete blindness in that eye in a matter of days. While admitted to Upstate University Hospital […]
Read MorePosted by: The Sumaira Foundation in MOG, ON, Voices of NMO
It was the late 1990’s. I was in my 30’s had constant pain down my left arm, and even though I couldn’t tie the symptoms down to any single event, my orthopedic surgeon had me on the surgery schedule assuming I needed a spinal fusion to fix a slipped disc. Then my MRI results came […]
Read MorePosted by: The Sumaira Foundation in NMO, ON, Patient.e, TM, Voices of NMO
I have a rare, chronic neurological disease that affects my central nervous system. It’s caused me to become temporarily half-blind and feel throbbing pain everywhere… I was diagnosed with Neuromyelitis optica (NMO) also known as Devic’s disease (similar to MS) last month after my MRI scans showed optic neuritis and brain lesions — and it’s completely shattered […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Imagine this: You’re driving on a highway, and suddenly, your hands stop working completely. You can’t grip the wheel. Imagine the terror and the confusion… And then imagine, that, thank goodness, your husband is in the car with you and takes over driving before you get into an accident. You assume something crazy happened and […]
Read MorePosted by: The Sumaira Foundation in NMO, ON, Patient.e, Voices of NMO
Life before NMO – I was an active mom, worked as a home health nurse case manager and an avid marathon/half marathon runner… Before work, I would wake up at 4:30 am most mornings and meet my running buddies for a six mile run. On Saturday’s, we would do our long runs which were 13-21 […]
Read MorePosted by: The Sumaira Foundation in NMO, ON, Proche-aidant.e, Voices of NMO
My name is Veronica and this is my NMO story. I am not a patient but a mother/caregiver of an NMO patient. I have always been in a way, made fun of because I am THAT parent. You know, the one that takes their kids to the doctor for anything and everything. I thank God […]
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