Strength of the Soul
— Mileidys Almaguer Iniguez

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

It is so important to get a good night’s sleep in order to function well the next day. A good night’s sleep energizes me and makes me feel like my body is being repaired while I sleep.