Jodi Arminio
Diagnosis: Neuromyelitis Optica Spectrum Disorder
Georgia, United States
I’m one of the lucky ones with neuromyelitis optica spectrum disorder (NMOSD), thanks to a supportive immediate and extended family and a neurologist who suspected right away what had taken the eyesight in my left eye and all feeling from the chest down when I saw him in November 2011. He treated me immediately with steroids, and when my NMO-IgG test came back positive, it only confirmed his diagnosis. Over time, my eyesight came back to 20/60, and I regained enough feeling and bladder and bowel function to make NMOSD an invisible disease for me.
I know I’m blessed, and I try to acknowledge that by leading a support group in Atlanta with a transverse myelitis (TM) survivor, Kim Harrison. Welcoming anyone with a rare neuroimmune disorder, we gather monthly (online for now) to welcome folks new to the disease, listen to members with questions or issues, celebrate milestones, and keep in touch with those experiencing setbacks or new attacks.
I’ve had the privilege to meet many people, in-person and virtually, with NMOSD and TM. Going to my first Guthy-Jackson Foundation Patient Day was an incredible experience. I was still struggling with my ‘new normal’ and occasional flares when I attended Patient Day in 2013. Meeting others with my disease was enlightening and inspiring, and listening to the doctors and researchers was educational and left me hopeful for better treatments and possibly a cure. I left there motivated to educate others about this rare disease, I just wasn’t sure how to start.
Then, through a University of Texas Southwestern Medical Center (UTSW) blood study, I met another NMOSD patient in my north Atlanta area, and we decided to start a support group. We left flyers at doctors’ offices, had others spread the word, and we held our first meeting in March 2015. We figured if no one showed up, we’d go to a bar and call our group of two “Wine and Whine” – but we had a full room of patients and family members. Later that year, I got a call from Kim Harrison who led a TM support group, asking if we wanted to combine groups. We moved to a bigger room at the Shepherd Center and we’ve been meeting ever since, going online since the coronavirus lockdown. The group ebbs and flows, but as a church youth group leader, I was told even if you only have one youth show up, you hold the class because maybe that one youth really needed to be there. So that’s our policy for support group too!
Kim and I make a good team – she excels at activism and involves us with the SRNA, NORD, and Rare Disease Day events at our Capitol and sporting events at Shepherd Center. I handle communication and organizing the group meetings. We’ve got a tremendous group of caring and open people who have experienced just about every symptom and situation possible. When stumped, we refer people first to their doctor, but also to the Guthy-Jackson Foundation and SRNA for information, and various Facebook groups, including our own, for additional support.
The effects of any of the rare neuroimmune disorders can be devastating – not just physically, but emotionally, financially, and socially. However, we live in a marvelous time where people with a rare disease don’t have to live in a vacuum of information and relationships. Through the internet, you can learn so much about your disease (just search out reliable sources!); through social media, you can connect with others like you; through online meetings, you can participate even when you are miles away from a fellow patient. Through Guthy-Jackson Patient Days and SRNA Symposiums and Family Camps, you can spend time with medical experts, researchers, and other patients. Through their websites, you can view videos of the talks if you can’t make the events. And from a support group in your area, you can get the experience-based knowledge, sympathy, empathy, comedy and support you need to overcome NMOSD and the rest of the rare neuroimmune disorders. NMOSD has ‘blessed’ me with a lot of crappy things, but it has also truly blessed me with friendships, inspiration, and an opportunity to help others, and I am thankful for it!
Jodi Arminio
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