Posted 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, 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, 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 […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Back in 2013 and 2014, I completed two 100km walks to raise money for Oxfam – something I am so proud to have done! BUT in 2016, when I tried to do it a third time, I trained right up to walking 50km in a day however, I was suddenly unable to sleep, to stay […]
Read MorePosted by: The Sumaira Foundation in MOG, Patient.e, Voices of NMO
Now that I have been diagnosed with Myelin Oligodendrocyte Glycoprotein Antibody-Associated disease, or MOG-Ab disease, I have met others who are afflicted and have listened to their stories. They all start similarly, with an acute attack, out of the blue, and always marking the start of an unexpected turn in health. My story is different. […]
Read MorePosted by: The Sumaira Foundation in NMO, ON, Patient.e, Voices of NMO
In February 2019, I received an NMOSD diagnosis after nearly 11 years of being treated for multiple sclerosis… I think when you are diagnosed with a chronic disease, knowing who you are is critical to how you move forward with living the life you want to live. With certainty, I can say that I live […]
Read MorePosted by: The Sumaira Foundation in NMO, ON, Patient.e, Voices of NMO
My NMO story started about 15 years ago. I was a sophomore in high school and was just released for summer break… The very next day, I started to feel ill. I was throwing up uncontrollably. It started with just a few times a day, and suddenly I was throwing up or dry heaving 12 […]
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