Neuromyelitis optica (NMO) isn’t all bad. Hear me out. Sure, the needles, pain, and endless worry about permanent paralysis and vision loss are no fun, but there’s a silver lining if you know where to find it. At the start of every year, I think about all of the people…
Relationships
After experiencing all of the challenges that came with my 13-year-old daughter Bella’s neuromyelitis optica (NMO) diagnosis and the rareness of the disease, I wanted to find a way to connect with other NMO patients and caregivers. Bella was so young that I felt I needed the connections to…
¿Cómo estás? 你好嗎 Ça va? How are you? With the holiday season upon us, people are getting together, hopefully safely, considering the persistent COVID-19 pandemic. While I always enjoy seeing friends and loved ones, I find it uncomfortable when I’m asked difficult questions like, “How are you?” While the phrase…
Sometimes in life, the easiest decisions make the greatest impact. It probably wasn’t reasonable for a new couple to get a dog together, but that’s exactly how Marmaduke came into our lives. A wild idea led to an internet search, and as luck would have it, we were able to…
In the first five years after my neuromyelitis optica (NMO) diagnosis, my health took a sharp nosedive, which shook up everything I thought I knew about my future. Suddenly, my body was betraying me in a major way. My limbs stopped working properly, my vision was all over the…
Columns
How I Manage My Healthcare Team
As a rare disease patient with neuromyelitis optica and comorbidities, my medical care is complicated. I have an extensive healthcare team that includes: a family doctor a neurologist and neuro nurses a rheumatologist three pharmacists a home infusion nurse an immunologist three endocrinologists a physiatrist a gastroenterologist…
Years ago, I saw a film called “Lorenzo’s Oil,” which was based on actual events. A child, Lorenzo, got sick with a rare disease, and his health deteriorated quickly, but nobody could help him. His parents were determined to find a cure. I greatly admired their tenacity, and I’m…
In early April, I became a grandmother (Gigi) for the first time. Reaching this important milestone gave me pause. In the months leading up to the baby’s birth, I thought a lot about what kind of grandmother I would be. Phoenyx was born just 16 days after my 50th birthday,…
The Illness Challenge Foundation (ICF) sponsored the second annual Asia-Pacific NMOSD Patient Day in Beijing, China, to increase awareness and improve care for those living with neuromyelitis optica spectrum disorder (NMOSD). The May 25 event brought together NMOSD patients, neurologists and other healthcare professionals, and representatives from a variety…
I had been misdiagnosed with multiple sclerosis (MS) when I got married. My husband and I talked about having children, and my doctor at the time told me that pregnancy would not affect my disease. So, we looked into in vitro fertilization (IVF). Although…
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