March is NMOSD Awareness Month!
Today marks the beginning of Neuromyelitis Optica Spectrum Disorder (NMOSD) Awareness Month! Throughout the month of March, we will highlight members of our community who have been diagnosed with NMOSD and share information about the disorder. It is important to spread awareness of NMOSD to help lead to faster diagnoses, more effective therapies, and better understanding.
NMOSD is a rare relapsing autoimmune disorder that preferentially causes inflammation in the optic nerve and spinal cord. It is sometimes referred to as Devic’s Disease, as it was first described by Eugène Devic in 1894, and he coined the term “neuro-myélite diffuse aigüe.” It is typically characterized by longitudinally extensive transverse myelitis (LETM, myelitis which is 3 vertebral segments in length or greater) and unilateral or bilateral optic neuritis. Individuals can present with short lesions as well though. You can learn more about NMOSD by visiting our information page and our Resource Library.
We asked members of our community who have been diagnosed with NMOSD to share how their diagnosis has impacted them, what challenges they have faced, and how they feel encouraged or supported. You can read some of their responses below.
“In the beginning, it was difficult to deal with the fears of what could happen and how the symptoms could worsen, rather than experiencing and dealing with the real symptoms. What has changed is my awareness of the actual experience. It’s not about interpreting the experience as good or bad, but just being in it. It is a lot about just accepting the physical limitations the disease can bring.
I feel safe and protected in all of this. Within me, I have a place from which I can make reliable, trustworthy decisions, and this is very empowering and encouraging. I have learned a great deal about what it means to adapt to certain circumstances and, again, to limitations. What’s also important for me is that I have a doctor who I feel very comfortable with. She’s someone I trust and I can talk to.”
– Alexandra Goulimi
“Sleeping and walking have been difficult. I’m not alone with NMO. Family and church family have been with me this far. Walking has completely stopped. Hearing others’ story has given me hope.”
– Ashley McCleskey
“It has been very difficult to have lost my independence. I was over 40 years old when I was diagnosed with NMO. I have learned to have more patience, find a hobby, and to write more. My husband of 25+ years and our adult children have been my BIGGEST supporters! My challenge is learning to ask for help when needed. My faith is what has encouraged me more every day.”
– Cindy Barrientos
“The altered sensations caused by the damage on my c-spine to the left side of my body have been difficult to get used to. The hyper nerve sensitivity, numbness, and feeling of the weight of my left leg have altered how I do things and interact with others. I don’t like to be touched anymore as it sends fireworks through my body when someone touches my left side, and I used to be a big hugger. Living with this disorder has definitely made me a stronger person as I do not let it define me. I take my bad days as my body demands rest and maximize my good days to the best of my ability. Fortunately, my family has been very supportive. What’s challenging is, from the outside, people see me and I could look very normal to them. They don’t understand the constant pain, fatigue, and discomfort I live with. I am encouraged that the medicine I am taking has stopped any further progression. It was a lot of trial and error when I first got sick 8 years ago with different drug therapies and the debate between an MS or NMOSD diagnosis. The last 2 years have definitely been good for what it is.”
– Darlene Mueller
Get involved in NMOSD Awareness Month by following us on Facebook, Instagram, and Twitter. Share our posts with family and friends to help spread information and stories! You can also get involved by sharing your own story through our This is Me campaign. By working together as a community, we can bring awareness to NMOSD and improve the lives of those who have been diagnosed with this disorder.
