For NMO Patients Like My Daughter, Summer Can Cause Heat Intolerance Symptoms

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by Candice Galvan |

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Summer is one of my favorite times of the year. The days are longer, the adventures seem endless, and the smell of barbecue, flowers, and freshly cut grass fill the air.

However, high temperatures during the summer, especially in tropical climates, can pose a challenge for those with neuromyelitis optica (NMO), including my 14-year-old daughter, Bella, by exacerbating NMO symptoms. Yet while this can be troubling, I’ve found there also is hope for relief.

The summer after Bella was diagnosed, when she was 9, we noticed that she would experience what her doctor described as an “NMO pseudo-relapse” when the weather was hot. According to the nonprofit Siegel Rare Neuroimmune Association, a pseudo-relapse is a “[t]emporary disturbance in the body’s normal state unmasking or worsening symptoms from a prior injury, without new inflammation in the central nervous system.”

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In the NMO community, the word “relapse” is frightening to hear. Bella’s neurologist explained that the symptoms of an NMO pseudo-relapse could be caused by many different factors, such as illness, infection, exercise, stress, or heat. Symptoms can vary and are sometimes severe. When Bella experiences a heat-related NMO pseudo-relapse, she feels dizzy and fatigued. She also experiences pain and swelling in her feet.

It is important to know how to treat symptoms of a pseudo-relapse to bring relief as quickly as possible. One way that Bella finds relief is by wearing a cooling vest. Cooling vests are helpful because they have small pocket inserts that hold ice packs to bring down the body temperature. She also uses a personal fan with a reservoir that can be filled with ice water. Additionally, she carries a water bottle filled with ice water, which helps to bring down her body temperature almost instantly.

The methods we use to keep Bella cool work most of the time, but there are times when we must resort to plan B. If the weather is too hot and her cooling devices fail to bring relief, rest is the best option for her to return to her baseline.

While pseudo-relapses may be common with NMO patients, I haven’t found many studies online about them, such as the effects they may have or what causes them. My hope is that researchers will conduct further studies on the issue to determine what might bring relief to those suffering from them.

While battling a rare disease like neuromyelitis optica can be difficult, it is imperative to live life to the fullest and enjoy all it has to offer. In a few short weeks, we will pack all of Bella’s cooling devices and embark on our first family vacation to enjoy the beach, sun, tropical weather, and time together as a family. Life sure is sweet.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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