quality of life

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,…

I still remember the feeling of despair I had while sitting on a cool stretcher in the neurologist’s office, after hearing devastating news about my health. The neurologist admitted that he had no idea what I had, but he assured me it was a severe condition. I wondered why after…

When I was being diagnosed, my initial MRI revealed that I had long lesions over several sections of my spinal cord. While I knew nothing about the disease I was about to be diagnosed with, I understood that any damage to my spinal cord was bad news. It meant I…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

My disability, caused by damage from neuromyelitis optica (NMO) attacks, often prevents me from fully participating in social events, outdoor events, and other activities. However, I still choose to participate in some of them, rather than not participating in any. This isn’t to please others, but rather to avoid…

One of the most difficult aspects for me of living with neuromyelitis optica (NMO) is dealing with chronic pain. It’s what most affects my quality of life, but in my opinion, it’s also the least addressed and treated issue. In 2012,…

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…

In my circle of friends, we often joke that being a rare disease or chronic illness patient is a full-time job. For me, living with not just neuromyelitis optica (NMO), but also several other life-altering diseases that require constant treatment, takes a lot of energy. I must attend numerous appointments…

Since 2012, I have been using Rituxan (rituximab) to treat my neuromyelitis optica. I had no major complaints about it until 2018. My neurologist back then referred me to an immunologist, who recommended I start immunoglobulin replacement therapy (IVIG) to increase the levels of immunoglobulins that had been…

When I think back over the years I’ve lived with my rare disease, neuromyelitis optica (NMO), and several comorbidities, including the times I received my life-changing diagnoses, one thing in particular stands out: Not once…