Strength of the Soul
— Mileidys Almaguer Iniguez

COVID-19 vaccine, pregnancy

Mileidys is a certified medical interpreter for people who speak Spanish. She is from Cuba and has lived in the U.S. for many years now — first in Florida and now in Massachusetts. Mileidys wants to encourage fellow patients living with NMO to be unafraid while hopefully shining a ray of sunshine on them. Mileidys does not say that the NMO road is easy, but that there are effective ways to cope with NMO, including staying informed and positive while keeping the faith.
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I Don’t Like Needles, but They’re Part of My Life With NMO

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…

Mileidys Almaguer Selfie

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Should I Get a COVID-19 Vaccine as an NMO Patient?

I have conflicting emotions about the COVID-19 vaccine. I feel dominated by fear, even though I know this vaccine will lower my risk of contracting the coronavirus. On one hand, I know how important it is to be protected against COVID-19. It’s especially important for me for two reasons: I…

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As a Rare Disease Patient, I Have to Hustle to Access My Treatment

Because there is little information available about certain diseases, many people may be misdiagnosed or undiagnosed. People with rare diseases are at a disadvantage compared with people with well-known medical conditions. Not only do people with rare diseases have limited information, but also their treatment is often not as…

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I’m Tired of Being Judged for Using a Disabled Parking Permit

If I asked a random person on the street if they think I have a disability, their answer would probably be no. However, one of the effects of my latest neuromyelitis optica (NMO) attack is that I do not entirely feel my legs. Additionally, I can’t walk long distances.

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When I Was Paralyzed, Envisioning My Future Helped Me Hold On to Hope

This column is a message to all of the patients currently undergoing an extended hospital stay. I know it is easy for people to share encouraging words when they aren’t the ones in a difficult situation. But let me just say that I know what you are going through. Unfortunately,…

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Recently Approved NMO Medications Are a Light on the Horizon

When I was diagnosed with neuromyelitis optica (NMO) in 2012, the U.S. Food and Drug Administration (FDA) hadn’t yet approved any medications specifically to treat this disease. However, doctors could select various therapies to help patients prevent or deal with attacks. When NMO patients had an attack, doctors treated…

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My NMOSD Diagnosis Was a Long and Difficult Journey

I was born and raised in Cuba, playing outside, running, and enjoying my friends. In my healthy teen years, I didn’t think I’d ever become chronically sick, much less stop walking. However, everything changed when I watched a movie about a boy named Lorenzo who suffers from a degenerative…

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