Posted 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, Patient.e, Voices of NMO
She thought it might be her fault. After all, she was working 14-hour days driving a truck, going to school full time and caring for a young son on her own… In 2008, Maurita suffered a bad stomach virus, but she worked and studied through it. Almost a year later, it happened again, virulently enough […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Greetings Everyone, I’m Shiela Marie Sta. Maria Rutaquio, from Binangonan, Rizal 1940 Philippines, who have this rare and incurable autoimmune disease called NMOSD (NEUROMYELITIS OPTICA SPECTRUM DISORDER), a demyelinating disease mostly mistaken as MS or Multiple Sclerosis, same symptoms but different treatments to manage it. I’ve been diagnosed since July 31, 2018, which commonly known […]
Read MorePosted by: The Sumaira Foundation in MOG, NMO, Professionnels de santé, Voices of NMO
Like many physician-researchers in my field, I spend a lot of time thinking about NMO, both inside and outside of the clinic. The science of NMO is fascinating to me and I have been very excited to see how much the field has changed over the past decade. I have been inspired by many patients […]
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 […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
I was a 26 year old working in the Pentagon in the Navy Executive Dining Facility. I was Active Duty Navy for almost 8 years… On October 18, 2017, I had a colonoscopy because I was losing weight, bowels had blood and mucus coming out. After that, I start having a tingling in my thighs […]
Read MorePosted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
I’m Ilene, the youngest of seven children. I come from a family of school teachers and musicians. I love board games, musicals, plays, happy movies, skeet ball, Tower of Terror and having other people cook for me. My dream life was to be a pianist, a teacher, get married, travel, have children, be the fun […]
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