Posted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Part I and II of this story were originally published in 2015 by NMO Stories, presented by The Guthy-Jackson Foundation and the Connor B. Judge Foundation. It was shared again on November 14th, 2019 in In Their Own Words by SRNA (Siegel Rare Neuroimmune Association). Part I Sometimes I think I could write a book about my story with NMO… […]
Read MorePosted by: The Sumaira Foundation in NMO, Proche-aidant.e, Voices of NMO
Jarrie grew up on a farm and declares himself a simple man. I think otherwise. I think Jarrie is a man for whom love is simply enough. Jarrie married his high school sweetheart, Donna, on Valentine’s Day in 1975. She died on New Year’s Day in 2021. Donna’s health began to deteriorate when she contracted […]
Read MorePosted by: The Sumaira Foundation in NMO, Voices of NMO
Tiffany was a military brat with both of her parents serving in the Navy, so joining up herself seemed the obvious choice for her. She enlisted in 2006 and met her husband on board a Navy ship in 2009. It was where she was meant to be. Tiffany was stationed in Suffolk, Virginia in January […]
Read MorePosted by: The Sumaira Foundation in NMO, ON, Patient.e, TM, Voices of NMO
I can trace my first NMO symptoms back to when I was just 12 years old… I’d be walking down a flight of stairs and for a split second, it was as if a switch had been thrown, cutting off communication between my brain and my legs and I’d fall down the stairs. Sometimes I’d […]
Read MorePosted by: The Sumaira Foundation in NMO, ON, Patient.e, Voices of NMO
It was December 2019. I struggled almost every day with tension headaches (eyes and nose). My primary care doctor suspected I had migraines and prescribed me with migraine medication. I don’t like taking medication (never have) and stopped taking the pills after two days. I chose to fight the headaches… On Christmas Eve, I noticed […]
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, 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
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
Nothing can fell Marie. No matter the punches that NMO throws, Marie just gets up again and keeps on going. A strong young woman who has learned to live with blindness and many years in a wheelchair, Marie, now 26, has been living with NMO since the age of 14. Like for so many young […]
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