VOICES OF NMO™ | Kelly Ann's NMO Story - Saving My Own Life

Meet the happy workaholic, Kelly Ann, an ambitious business + LinkedIn coach, podcaster and luxury brand consultant from California who candidly shares the ups and downs of her NMO story and the importance of dedicating your time and energy towards saving your own life.
For more stories, visit www.sumairafoundation.org

[@ava-wv2sw]

I woke up blind in both eyes one morning only being able to see some lights. My parents thought I was lying because I was in fourth grade and thought I just wanted new glasses, but I was perfectly content with my glasses. I kinda struggled describing what I was seeing. I don’t know if it’s for everyone with NMO but for me when I was blind it looked like I stared at the sun and then looked away just to see the sun there sun “burns” or “marks” everywhere I looked. My parents eventually took me to the hospital and the doctors and nurses had no idea what was wrong with me. So the hospital admitted me and put me on prednisone. I got most of my vision back but my right eye is a lot worse than my left. fast forward to summer break, 2 weeks away from back to school. I started getting signs of another relapse. I told my father and he immediately rushed me to the hospital. I forgot what all that happened because it was almost 3 years ago. I know that I was on prednisone twice and I did plasmapheresis. I did rituximab. Rituximab works but not as well as what I’m doing now. I go in for monthly treatments for IVIG and I take mycophenolate, three capsules by mouth twice daily. I’m only 3 minutes into your video at the moment and I don’t know if you brought this up at all, but the doctors here say that NMO mostly occurs in older black woman and they all look at me weird because I am a twelve year old white girl. They also say I am the youngest case of NMO. I’m still learning about my disease or the daily so it’s fun to learn from other people every once and awhile :)

[@TheSumairaFoundation]

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[@dianai5375]

Thank u for giving me strength... Am not in a v good place right now...

[@KellyAnnGorman]

Thanks so much for sharing my story...

[@myjourneylivingwithnmobyms4088]

i went to 4 hospital in a week before i got diagnosed.in march this year. also self employed and presently still in hospital which is now my present home due to i loss all. it very hard some days to stay strong

[@marynicholson1532]

Thank you for sharing. I too have NMO I was just diagnosed and have been put on rituxan as well.
I have nerve damage and brain fog as well. How are you doing now?

[@nehaduhan3327]

Please tell me what treatment you have taken as my mother has NMO now
Please help

[@lchferg5]

Did you have lesions for the MRI Diagnosis. & what were your symptoms💪🙏

[@lchferg5]

🙏🙏🙏