Columns

Six months ago, a blood test revealed that I had developed a rare side effect — a condition called hypogammaglobulinemia — from a biologic I’ve been on for five years for neuromyelitis optica (NMO) as well as two types of arthritis.

My heart goes out today to the neuromyelitis optica (NMO) patients in Cuba for two reasons. Firstly, it is difficult for them to access treatment right now. Secondly, the island is experiencing tropical weather. Neither factor is helpful for NMO patients. Mileidys wonders if we are in the…

Fourteen years ago, when I was in the process of being diagnosed, I suffered a major neuromyelitis optica (NMO) attack on my spinal cord. The resulting transverse myelitis robbed me of the feeling in my arms and hands. As an artist, this was utterly devastating. My manual dexterity…

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…

Summer has always been a struggle for me. While most people celebrate the warmer months and are off enjoying the great outdoors, I dread this time of year because I am very heat-sensitive. As soon as the temperature rises above 22 C (72 F), I feel terrible. The signals…

As a neuromyelitis optica (NMO) patient, sometimes I am under the impression that I am at a disadvantage compared with my healthy co-workers. Some of the daily routines that they complete effortlessly are a struggle for me. For this reason, at the end of my workday, I often feel as…

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…

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…