Columns

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…

My quest to become a wheelchair owner and user began with pitching the idea to members of my care team. As I shared in my last column, that didn’t go as smoothly as I’d hoped. But being persistent paid off when one of my doctors stepped up and…

When someone in your family has an illness, it can cause physical wear and generate an emotional and financial burden. The person who gets sick often loses their income but must pay medical bills in addition to regular bills. Even after being discharged from the hospital, a patient will…

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…

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,…

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…

I was hesitant about getting the COVID-19 vaccine because there is still limited data about its safety and efficacy in people with rare diseases. However, there is also no evidence that the COVID-19 vaccines harm people with rare diseases, including people like me who are immunocompromised. I am still…