Strength of the Soul – a Column by Mileidys Almaguer Iniguez

Tests, treatments, and medical procedures are important, but they can be a hassle and are sometimes painful. I don’t always know what to expect, which creates anxiety, especially if a needle is involved. As a neuromyelitis optica (NMO) patient, I have had bloodwork, MRIs, and spinal taps, and I…

In 2012, I had the unpleasant experience of receiving unexpected out-of-network medical bills for a hospitalization in Florida. There was nothing I could do about it. At the time, I wasn’t aware of any laws that might have protected me. But I now know that Florida is among the…

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…

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…

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…

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 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…

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…

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…

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…