Han has
Fabry disease

In summer, I wear a very thin windbreaker or shirt to prevent sunlight from directly touching the skin because I don't sweat.

All of our childhood holidays ended up being based around water…. and still are. I could never run, cycle, even stay out in the sun … but get your kids into dinghy sailing, surfing, swimming etc. to cool them off with spray. We quickly found that electric fans are good, but only if you can sweat (look up “cooling by evaporation”!) If not, you need a fan AND a water spray. Good luck

Taking off my t-shirt, rinsing it under water then ringing it out and putting it back on helps for an hour or so. Especially in the extreme summers of Australia. A spray bottle with cool water with the setting on mist cools my head down.

In hot weather I often suffer from an "overheated" body. Since 3 years I put a small pool in the garden and when I get too hot I put on a bathing suit and lie down in the cool water for a while. When I feel better I come out. My bathing suit then stays wet for a long time and this works like a kind of cool pack. You understand that a bikini does not have this effect. I advise the men to put on a cotton shirt as men's bathing suits probably no longer exist.

My daughter liked to run and always won first place in races. But after the race, her face flushed and she gasped. But strangely enough, she didn't sweat at all, so she thought there were no sweat holes. So I always carried ice with me during sports day. She had an ice massage on her face because she didn't sweat and had a fever. My daughter is sweating a lot now.

Amazingly, I sweat a lot on my body, but my face doesn't sweat at all. When I go out, I always carry water in a tumbler and wear a cool wristlet in the summer.

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When I feel the heat sensation in my hands and feet, I put them on cool objects. I remember putting my foot on a glass balcony door while lying down from the living room as a kid.

For me, I don't get more thermoregulation than sweating. When it's hot it gets breathtakingly hot, and when it's cold I get goosebumps and my skin gets sensitive. So I can't wear anything if its not cotton material and I wear a layer of a cotton shirt in winter.

When I go out on very hot days, I always make sure I carry a wet towel and a bottle of water with me. when my temperature rises a lot, i soak the towel and wipe my face and arm or Put them around my neck. Then it makes it bearable.

When I overheat I get in my recliner, turn a fan on me and put an ice pack on my neck. It works pretty quickly. Also I drink water.

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I grew up a very rural life in the central and western United States. My family worked doing cattle ranching, running a dairy for milk and farming. From age 11 to 21 we had a family farm in the state of Missouri, which is right in the middle of the country. I loved the life style, but working outside in the winter could be very cold and the summer was always hot.Maybe you have heard the expression "sweat like a pig". Well this staying was made up by people that don't know much about animals. Horses and most people sweat. Pigs do not sweat, they pant to cool down like a dog. This is one reason pigs like to get in a mud whole or water. Having Fabry I do not sweat either and I had great difficulties working during the hot, humid summer days. On the farm we raised lots of pigs and one of my chores was to keep them from getting to hot. I would take a long water hose out to the hog pins to fill the water tanks for them to drink and spray water over the pins to wet them down. They would come running to get under the cool water. When doing this I could point the water hose straight up in the air to cool myself down and then back over the hogs. I would do this two or three times a day so they didn't get to hot. Now I work in an office with air conditioning, which I like much more.

As a woman with the classic form of Fabry disease, I don't fit the most well-known symptoms at all. For instance, instead of reduced sweating, I was the opposite. In my early teens I always sweat excessively under my arms, which I was of course terribly ashamed of.  Later, as a young adult I would sweat profusely in hot weather. Luckily, I live in a country where the temperature rarely rises above 30°C/86°F, yet in the summer it seemed my hair was always wet with sweat. When I would exert myself, it ran from my head in streams, but when the weather was hot, the result was the same without any effort on my part. Despite the fact that I could sweat a lot, and everyone said: you can cool down well this way, I had the feeling that I could succumb to the heat at any moment, or start whistling like a kettle. This was mainly because I was only sweating on my head, nowhere else, weird, but true. It's terrible to get overheated with Fabry, which can result in even more annoying problems.That's why in the summer I sleep with my head on a cooling mat (sort of gel pillow), which goes in the fridge during the day, otherwise I wouldn't sleep a wink at night. These mats are sold in pet shops for dogs, but I don't let that bother me, I have a nice cover on it!!

When my brother and I —both people with Fabry— were young, we had problems with overheating on hot summer days. Back then cars didn't have air conditioning, so our mom would wet towels and place them on our laps to help us cool down on long drives.

There was a benefit at Han’s school. The class would run for charity. Han is generally talented when it comes to sports. But because he has Fabry disease, he tends to quickly overheat when performing an explosive effort, such as sprinting. That’s why we always pack a water bottle in his backpack. At the finish Han went straight for his water bottle and poured it over his head like a waterfall.

Children love running around and chasing each other. While my eldest daughter could frolic in the sun like it was nothing, my son Tae often complained about the heat. When he described a burning sensation in his hands, we took him to the doctor. Ultimately Tae was diagnosed with Fabry disease. Now Tae can run outside as much as he likes, but at the hottest hours of the day, we play the shadow game. We go sit under a tree with a scrapbook. Over the years Tae generally learned to stay in the shade.

We are keen hikers and like to take our children Noa and Ana with us on hikes. Because Noa has Fabry disease, we always carry extra water bottles, to keep him from overheating. One summer day, we filled our bottles at a public tap. By then Noa was exhausted and his face was flushed. He turned on the tap and let the water run into his mouth and all over his face. Best way to cool down, he says. :)

We went on a little trip in the mountains. It was hot. Far too hot. My daughter Yunio has Fabry disease and the temperatures were unbearable for her. In the flat, the air conditioning was broken. Sweat was dripping from my face. But my little girl didn't sweat a single drop. Her hands and feet felt like they were on fire. I decided to buy a fan and bottles of water in the nearest shop. With the fan on full speed Yunio could breathe again.

Gardening is my favorite pastime. I can spend hours taking care of the plants and flowers in our garden. I passed on my green thumb to my daughter Julia. One hot summer day Julia was watering the plants with the garden hose. She decided the best way to do so was to mimic the rain and point the hose straight up, so the ‘rain’ would pour down on her. Back then, we didn’t pay it no mind. It wasn’t till much later we realized she is heat intolerant and has Fabry disease.