It is common for Fabry disease patients to complain about being heat intolerant. Because of this, summers can be challenging.
One study reported by Fabry Disease News noted that nerve cell loss in sweat glands may contribute to sweating issues in Fabry patients.
With summer upon us, I have been thinking of ways to combat this inevitable problem, as well as how I can help my kids do the same.
I am rarely outdoors without my water bottle, which has become an extension of me. I believe that water helps me manage Fabry disease symptoms year-round, but especially during the summer.
I tell my kids several times a day to drink more water. With Fabry disease and heat intolerance, which results in an inability to sweat, drinking water is vital. Sweat is the body’s primary way of cooling itself down. When the body lacks this vital function, it tends to overheat.
Increasing the amount of water in the body may help it to produce sweat, and in turn, to cool the body down. I aim to drink at least half of my body weight in ounces of water, but I typically increase that amount in the summer.
Another way to help keep body temperature cool in the heat of the summer is to be mindful of the time of day you are outdoors. I exercise for about an hour most mornings, even during the summer. However, I do not exercise in the afternoon heat. I’m aware that my body will overheat, and the pain in my hands and feet would be unbearable.
If I do need to be outdoors when the temperature is the hottest, I need to be near a body of water. After a quick jump in a lake or a pool, the pains tend to dissipate, and my body temperature is brought back to a more normal temperature.
At a Fabry conference I attended, cooling towels were suggested as a way to keep the body cool. I like the versatility and affordability of the towels as a way to stay cool when I need to be out in the heat.
At the end of the day, it comes down to knowing your own body and how you react to heat. Summer is my favorite season and I aim to enjoy it as best I can — with plenty of water.
Note: Fabry Disease 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 provider 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 Fabry Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Fabry disease.
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