Living with NMO
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- Опубликовано: 13 мар 2012
- Neuromyelitis optica (NMO) is an uncommon disease syndrome of the central nervous system (CNS) that affects the optic nerves and spinal cord. This rare neuroimmunologic disease affects approximately one in 100,000 people. Most patients have never met another person who has NMO. They live with their disease isolated from others like them, unable to relate their experience and frustration. In fact, NMO is so rare, many clinicians aren't aware of it and thus are challenged to provide treatment or even answers for these patients.
The Guthy-Jackson Charitable Foundation is dedicated to funding basic science research to find answers that will lead to the prevention, clinical treatment programs and a potential cure for Neuromyelitis Optica (NMO) Spectrum Disease.
I’m 26yrs old and was diagnosed with NMO at 16. It started with pain in my right eye and having trouble moving my upper and lower extremities. I went from an active young teenager to someone who kept having to use wheelchairs, canes, walkers, and now I use forearm crutches and I wear two leg braces. I now go to school, I work part time, and I’m living on my own. I’m currently blind in my right eye from having so many attacks and I still have old lesions in my spine. I’ve come so far and I’m happy. March 2020 is NMO Awareness and I cannot be anymore happy that this is being more recognized by so many.
Hello Andrea! This was two years ago but if I may ask how are your symptoms now? My aunt was diagnosed with NMO and is currently re-learning walking. As a 15 year old I’m trying my best to learn what I can about this disease and what can be done to make things easier. Stay strong!
God bless Victoria Jackson for the NMO Cure Mission.
Yes, quite aware of this and lack of information by doctors here in Canada. Fortunately, for me and anyone is else, Dr. Mark freedman at the Ottawa MS clinic has taken an interest in the condition quite a bit. It is scary as I have just started teatment due to a recent relapse and the guidance is much better. The lack of knowledge though that I went through was frightening. My own GP did not even know of its existence. Kudos to the Guthy jackson foundation.
How long do people with nmosd live with treatment
What is exact treatment for this disease
I think I might be affected my it. I went blind within a week, after treatment it came back but my vision is now permanently damaged. I have the same problem, nobody managed to diagnose me (they thought it might be MS, but I don't have any cerebral lesions) with anything until I recently found out about it. Hopefully someone will perhaps be able to help me soon, because it really seems like that's what it is.
Notice how they have nothing recent. 3 and a half years ago I was playing drums on New Years Eve, that March I fell and my life took a drastic change and a year later I was diagnosed with NMO. My bladder and bowels are compromised, I use a walker, I'm ready to go now at 69 years old I don't want to get worse I just want to go.
I am almost relieved my antibody test was positive. Diagnosed two weeks after waking up with this horrible disease
Have you treated from NMO?
My daughter haved nmo she need help can't walk for 7 months please help my daughter ashanti Thompson is 14 God bless you i live in Kingston Jamaica 🇯🇲 ❤
Mushrooms like lions mane and turkey tail , cordyceps may help along with a paleo diet minus milk and eggs and take vitamin d and taurine
NMO has changed my life forever I was initially misdiagnosed it was this and not the condition that changed my life Beverly Gordon
I have NMO too
Though mine isnt as bad
I went through the spinal pain and the blindness first in my left eye then my right
I couldnt urinate too
How was you diagnosed?
My mother suffered a lot due to NMO please guide me how to treat it