Strength of the Soul – a Column by Mileidys Almaguer Iniguez

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.

April 12, 2021 Columns by Mileidys Almaguer Iniguez

Deciding If Pregnancy Is Safe as a Woman With Neuromyelitis Optica

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 looked into in vitro fertilization (IVF). Although…

March 29, 2021 Columns by Mileidys Almaguer Iniguez

Reminding Myself That I Don’t Have to Be ‘Wonder Woman’

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. Unfortunately, this doesn’t happen for me every night. Still, I…

March 11, 2021 Columns by Mileidys Almaguer Iniguez

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…

February 25, 2021 Columns by Mileidys Almaguer Iniguez

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…

February 11, 2021 Columns by Mileidys Almaguer Iniguez

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.

February 4, 2021 Columns by Mileidys Almaguer Iniguez

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,…

January 14, 2021 Columns by Mileidys Almaguer Iniguez

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…

December 10, 2020 Columns by Mileidys Almaguer Iniguez

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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