How raising awareness of NMO benefits our community
What a better understanding of the disease would mean for patients, caregivers
Neuromyelitis optica (NMO) is the illness that robbed my youngest daughter, Bella, of her innocence and a big part of her childhood. It’s the illness that appeared to us overnight in 2017, changing our lives forever. It’s what I was instructed to Google when Bella was diagnosed.
NMO is a rare and incurable autoimmune disease of the central nervous system that mainly affects the optic nerves and spinal cord. While our journey has been difficult, Bella is alive because her doctors were aware of the condition and administered the proper treatment. Still, I often wonder what the NMO community would look like if there were even more awareness and understanding of the disease.
For starters, fewer patients would be misdiagnosed and given the wrong medication, which could damage their body further or even take their eyesight. Increased awareness would also lead to more healthcare providers believing patients when they say they’re experiencing pain, weakness, or numbness — instead of sending patients home prematurely because they “look fine.” It would help doctors begin treatment more quickly, which could save a patient’s life or minimize the damage being done to their body. Most importantly, if there were more awareness of NMO, many of the people whose lives were cut short by this disease would still be here with us today.
More than five years after Bella’s diagnosis, it’s difficult to imagine life without NMO. While an online search taught me the basics of the disease, I’ve learned far more from the stories that other brave patients and caregivers have shared. I firmly believe that raising awareness by sharing our experiences is what’s led to progress in our community, including more treatment options, better access to care, and more timely diagnoses.
While NMO has taken much from our lives, it’s also given us a great deal. Bella is a beautiful, caring, and confident 14-year-old who now checks herself in for doctor appointments, explains her symptoms, advocates for her care, and reassures others who are new to the NMO journey.
NMO has taught me to be a better mom, friend, wife, advocate, and caregiver. My life has purpose and meaning. I’ve discovered just how powerful my voice is, especially when I’m advocating for Bella or other NMO warriors.
As I reflect on the past five years, I’m grateful for Bella’s doctors, nurses, and team of specialists. Their awareness of NMO and quick response saved her life.
I’m also grateful for Bella’s fellow warriors, who are heroes for our entire community. There’s no way Bella and I could’ve made it through the storm without their support, bravery, courage, and desire to help others. Alone we’re strong, but together we’re stronger.
Together, we’ll continue raising awareness and illuminating the darkness of NMO. And one day, we’ll find a cure.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).