Summer can be a dangerous season for those with heat sensitivity

Summer is here! In our home, that means fun things like trips to the pool and sleeping in. It also requires us to constantly be careful about the temperature in our house and keep an eye out so that our daughter Amelia doesn’t overheat.

Even before she was diagnosed with Friedreich’s ataxia at age 8, we knew Amelia was sensitive to overheating. We would joke that Amelia was like a popsicle, and if we weren’t careful, she would melt. There were funny stories of young Amelia losing her temper when she got even a bit too warm. She was like a boiling tea kettle letting off steam while the rest of us were barely feeling the heat. This joke stopped being funny when we realized how dangerous being in a hotter environment was for her.

Amelia was only 7 when she had her first terrifying incident with overheating. It resulted in slurred words, increased loss of coordination, and a panicked phone call home. Since then, we’ve been careful about Amelia’s body temperature and what she is exposed to. I’ve also had to shift my thinking and let go of some previously held beliefs.

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Changing my mindset

I grew up in a family that was energy-conscious with all the typical clichés. We were reminded not to heat the outside world by leaving windows or doors open in the winter. Unless you wanted a lecture, you did not leave appliances running or lights on when you left a room. We also didn’t turn on the air conditioning unless it was absolutely necessary.

I carried this view into adulthood and my marriage. Our house was always the last home around us to turn on the air conditioner in the summer. It was a running joke with the neighbors that they knew it was really hot out when our unit was finally running. But our family culture and my mindset had to change as we faced increasing heat in our area and the needs of our child with Friedreich’s ataxia.

We have an old home with beautiful woodwork but not-so-lovely ductwork. Our upstairs had several registers to push cold air into the second floor, but without a return vent, the hot air was stuck. After years of using window air-conditioning units, we needed a better option. Amelia was not sleeping well, which meant that I wasn’t, either.

We had our home assessed for many options, such as a whole house fan in the attic or busting out a wall to create a return vent. We finally landed on having mini splits installed in our bedrooms. These small indoor units hang close to the ceiling on the wall with pipework down to a larger unit outside. They take less energy to run than our whole house unit and are controlled with a remote that, shockingly, we haven’t lost yet.

This decision to have them installed came after a lot of conversations with a trusted contractor and a ton of research. It was a financial investment and we wanted to make a good decision. These mini splits allow us to not only cool Amelia’s room in the summer but also heat it in the winter. They can act as a dehumidifier as well, which in central Ohio is a wonderful thing.

One of the additional benefits we found was that Amelia slept better when she was able to control the temperature in her room. And when Amelia sleeps better, this momma gets some much-needed rest!

Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.