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Posted by: The Sumaira Foundation in Patient, Voices of NMO
My name is Vanessa, I’m living with CNS vasculitis—and thriving. It’s been a journey marked by uncertainty, grit, and an incredible team of specialists who’ve helped me navigate this rare autoimmune condition. Thanks to a multidisciplinary approach involving neurology, hematology, oncology, pulmonology, immunology, and even genealogy (HUGE thank you to University of Utah Health!), I’ve found a way to keep going and live fully.
I’ve been living with autoimmune conditions since I was a teenager. Over time, they’ve seemed to cluster, like puzzle pieces slowly revealing a bigger picture. By summer 2023, I was in full swing: a full-time mama, working as a Registered Dietitian Nutritionist in Southeast Idaho, and preparing for graduate school. Life was busy, beautiful, and brimming with plans.
I started experiencing frequent light-headedness/”fullness”, low blood pressure, unintended weight loss, and a deep fatigue that no amount of sleep could fix. Then came the memory lapses—I began forgetting turns on my daily commute, the same route I’d driven for 20 years. With grad school just a month away, books paid for, childcare arranged, and dreams in motion, I knew I had to be in tip-top shape before diving in. I reached out to my local medical team. Labs, heart monitors, and assessments all came back WNL—within normal limits. But I knew my body. I knew something was wrong.
Fast forward to November 12, 2024. I was juggling family, work, and school. My symptoms hadn’t let up. That morning, I was playing with my little ones when a euphoric wave washed over me. I turned to my husband, who was serving breakfast, and said, “I don’t feel right.”
An MRI revealed a 2.5-inch brain lesion. I was immediately transported to the University of Utah Hospital. The initial suspicion was lymphoma. What followed was a whirlwind: lumbar punctures, PET scans, MRIs, and ultimately—brain surgery. The results ruled out lymphoma but pointed toward an autoimmune process. I spent a month in the Neuro-ICU (thank you, incredible team!), and while the procedures were intense, what hurt the most wasn’t the IV sticks, the migraines, or the surgery—it was being away from my girls.
I couldn’t pick them up. I couldn’t carry them. That weight restriction weighed heavier on my heart than anything else. I try to make up for lost time now with all the snuggles—and then some.
I’m still working with my team on a final diagnosis, but autoimmune CNS vasculitis is present and active. Steroids, immunotherapies, and other medications have helped (The vasculitis ebbs and flows). I joke that the steroids give me a moon face and some weight gain, but as long as my husband can still pick me up, all is well—LOL.
I’m deeply thankful for him, my familia, and my medical team. Seeing Dr. Stacey Clardy at Patient Day in Salt Lake City was a highlight—she’s one of the GOATs! With their collaborative care, I’ve been able to maintain my quality of life and keep moving forward.
And speaking of moving forward… I DID IT! I successfully completed my MPH! Woot! That milestone means everything to me. It’s proof that even in the midst of medical chaos, motherhood, and uncertainty, I can still rise.
I’ve learned to take the lemons life hands me and not just make lemonade—but to savor every drop. Infuse this life with the oils, zest, juice, and seeds. Make the BEST agua fresca one can make.
Thank you, Sumaira, for the warm welcome, the tight squeeze, and the hope you bring to this journey. I look forward to connecting with others and hope to find more unicorns like myself. I am proud to be TSF’s 1st Ambassador representing CNS vasculitis.
Cheers to thriving, healing, and living fully.
—Vanessa 
