Posted 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
My name is Sherry. My experience with my disease is a little different and backwards… I was taking care of my father who had MS for many years and experienced sporadic health issues but never at the same time. I began to notice that these issues were becoming increasingly worse, with more signs and symptoms […]
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 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, Patient.e, Voices of NMO
On Monday morning, Pam had a headache. For a woman who never got headaches, this was notable. In addition, when she turned her eyes right and left, she experienced eye pain. She took some ibuprofin, and went to the office, where she worked as a dental hygienist. On Friday, Pam had an existing appointment […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Here is my story of how I was diagnosed with Neuromyelitis Optica and just how scary it can be knowing that something is wrong but not being able to find out what that something is. I am not one to share my emotions. The last 15 months have harbored some of the scariest times of […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, TM, Voices of NMO
Paula is a walking miracle. She looks good, feels good and can do most everything she ever did in her life, though she is now eligible for senior discounts. Paula has NMO. Lupus. Hashimoto’s Disease. Sjogren’s Syndrome. Raynaud’s Syndrome. Postural Orthostatic Tachycardia Syndrome (POTS). Fibromyalgia. When she was just 15, Paula was diagnosed with Idiopathic thrombocytopenic […]
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