Our sweat glands play an important role to cool down our bodies and regulate our temperature.  Absent or nonfunctioning sweat glands are one of the key symptoms of ectodermal dysplasias. If you don’t sweat, you may experience health issues if prolonged overheating occurs and the body isn’t cooled. This can be serious for you, your child, or anyone that has ectodermal dysplasia if not prevented or treated.

If you are searching for ways to manage hypohidrosis, look no further! Today, we will explain why individuals with some types of ectodermal dysplasias don’t sweat and suggestions for how you can successfully manage it in your daily life.

What exactly is hypohidrosis?

A typical person not affected by an ectodermal dysplasia is born with approximately 2-4 million sweat glands. People born with some types of ectodermal dysplasia may be born with few sweat glands and the ones they have may not work normally. They don’t sweat normally. This condition is called hypohidrosis.

In our new library article about sweat glands and ectodermal dysplasias, pediatric dermatologist, Dr. Elaine Siegfried, explains that with less sweat glands, individuals with ectodermal dysplasia do not produce enough sweat to cool off their bodies, for “sweat production is controlled by the nervous system, in response to increased body temperature.”

There is a common misconception about hypohidrosis within ectodermal dysplasias, as people often think that the inability to sweat is only found in hypohidrotic ectodermal dysplasia (HED). Hypohidrosis is also present in ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome, ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and other types.

Read Dr. Siegfried’s article to understand how hypohidrosis can be easily mixed up with its opposite, hyperhidrosis, which is excessive sweating and how it differs from anhidrosis.

Learn more about Sweat Glands and Ectodermal Dysplasias

Signs of Overheating If You Don’t Sweat

Our body temperature fluctuates throughout the day depending on our activities. If it is not regulated, it is all too easy to overheat. Significant overheating is called hyperthermia which could lead to serious medical consequences such as heat exhaustion, heat strokes, and possibly death. While those conditions are possible, taking preventive measures and using common sense will make them unlikely.

It is imperative to catch the signs of overheating early on to avoid health concerns. These signs typical consist of:

  • Fevers
  • A flushed face
  • Red ears
  • Lethargic movements
  • Labored breathing

Your child will likely get crabby when they are hot so look out for that! Kids typically don’t want to end their playtime, even if their bodies begin to feel hotter than normal. So it is important to teach them that if they feel too warm, they must alert their parents or take action to cool themselves down in the ways they were taught.

If your affected child is a baby, you may not want to bundle in blankets as it they may overheat. Newborns should not be put under warming lights if jaundiced.

If you have little children who don’t sweat, urge teach them how to recognize if their body is heating up more than it should. Some parents teach their kids to say phrases such as “I’m getting warm” or “can I go somewhere cool?” whenever they are getting too uncomfortable. You will also find that children often instinctively seek the shade or cool areas to cool down.

How to Stay Cool

Our Cooling Guide is a great resource to learn more about hypohidrosis and to find cooling tips.  Some of the best advice come from our families who have the most experience. They share with one another what they have learned in our different Facebook groups. Here are some things families said they use the most to keep cool:

  • Cooling mattress pads – These mattresses have built on cooling technology to help regulate your body temperature during the night.
  • Temperature monitor – This will allow you to pinpoint your child’s temperature easily. 
  • Cooling vests – These vests can be helpful for hot summer days or in situations where you may not have access to as much water. They even come in toddler sizes. They can be worn over your clothes to keep you feeling cool for hours. There are lots of companies offering a variety of different options. (add pic?)
  • Cooling caps – Your head and upper body are prone to heating up quickly, and these caps will help you regulate your body temperature.
  • Spray bottles – Not only are these fun to play around with, a quick spray is perfect for when you need a whiff of cool water. They are inexpensive and easy to carry with you at all time.
  • Misting fans – You get the best of both worlds with this device – air flow and water!
  • Wet your child’s shirt before going outside. Rewet as the shirt dries.
  • Warm showers – Make sure that the shower is warm and not cold. A cold shower will shock their body. But, a warm shower will allow their body temperature to return to normal at a steady rate.
  • Tint windows of your car to help prevent the sun from warming them in the back seat.
  • Install an auto starter for your car. On warm days, start the car with the air conditioning blasting for several minutes to cool it down before getting in.
  • Lots and lots of water – This tip cannot be stressed enough! Drink it. Wear it.

You can read more about hypohidrosis and how to chill out in the car.

Tips and Tricks When You Don’t Sweat

Rebecca Sylvester talks about her greatest struggle to keep her sons cool.

“My brother had HED growing up, so we had a game plan. I also have two sons with it. The greatest struggle would be when you get into a situation where you don’t know an easy way out to get cool, like on public transportation.

Or if there’s a long walk outside, and when we participate in summer sports. We plan what we do based on the weather. During school, my kids carry a camelback and wet their shirts. We love to stay at the lake during the summer.”

One of Rebecca’s sons, Joseph, has HED. He loves to ski in the snow!

For NFED mom, Rebekah Parish, planning ahead helps her son Mason stay cool day to day. Mason is affected by HED.

“Awareness, preparation, and monitoring. We gauge our activities around the temperature and humidity levels when planning our day. My son, Mason, loves it outside, so we try and work around the higher temperatures to maximize that play time.

As temperatures increase, we continue to monitor him, moving him to shaded activities, adding his vest, a hat, or a cooling hat to extend his play.  Most of his play areas have been set up in the shaded areas around our house. We schedule naps, indoor play, learning activities, library time, etc. during the hottest times of the day.”

Advice from Adults Who Don’t Sweat

Coping with hypohydrosis does get easier as your child gets older. They learn how to handle their condition without constant guidance from their parents. They will be able to use their independence to guide others through the same journey, just like 29-year-old Kevin Kronvall, who has AEC syndrome. He gives fantastic advice as talks about his journey with hyperhidrosis from when he was young, to today.

“It’s important to not let nature dictate how you choose to live your life though. Being outside and active were important to me, but you also have to understand, there are certain things that you may have to do to be able to enjoy it and adjust. The biggest struggle was remembering to hydrate and making sure I had adequate protection from the sun like a hat, sunscreen, wearing a rash guard style t-shirt or long sleeve. Finding the balance of being outside too long was tough.”

Kevin’s hypohidrosis has made him more aware of his actions and how to handle his condition.

“I think the biggest thing is the shift in accountability. When I was young, it was more on my parents to remind me to put on sunscreen or to wear a hat outside. As you grow older and become more mature, you build those proactive behaviors. You also start to understand the reasons why you take extra precautions. You always remember the times vividly when you didn’t put on the sunscreen-it burned for a few days- so better listen to mom now!”

Kevin is a big proponent of staying active and refusing to let your condition prevent you from engaging in outdoor activities.

Kevin does not allow his hypohidrosis to dictate his life. Here he is running a marathon!

“I think the biggest thing parents can do is to get their kids involved in as many activities as possible, whether it be sports, theatre, etc. When you’re playing sports, you have to get creative. I played a lot of soccer growing up. I would get water and sunscreen at halftime or during a slow possession in play or ask to be subbed out since the inability to sweat would tire me out sometimes. As you grow older, you can kind of feel it in your skin when your body is starting to heat up a bit-kind of similar when you noticed you have eaten too much at a dinner and feel bloated.” (add pic of marathon run)

A key takeaway that Kevin provided is a truth that the NFED encourages all families to explore.

“The more involved the child is, the more confident they will become and embrace dealing with different situations and being able to overcome challenges such as not being able to sweat.”

We agree with Kevin. Kids who don’t sweat should not let their condition stop them from having fun. Teaching your child to figure out ways to do the activities they love will go a long way in helping them to be on teams, pursue sports and learn about themselves. Providing them with the tools to do that and safely is key.  Virginia Higgins shared how she managed staying cool while exercising in her story, “I Have AEC, and I Can Run.”

What are your best tips or tricks on how to handle hypohydrosis? Let us know in the comments. We would love to hear your story!

4 comments on “Don’t Sweat? Here’s What You Need to Know”

  1. 1
    Anthony Parkes on June 3, 2020

    My husband was diagnosed with ed throughout genetics test two years ago our doctors don’t know anything about it so don’t know how to help or treat him is there anyone in uk that could help or get help with the cooling hats an shirts as we also have two grandsons with ed look forward to hearing from you many thanks

    1. 2
      Jodi Edgar Reinhardt on June 4, 2020

      Hello. We are glad that you found our website. We encourage you to explore our website as we have lots of information about ectodermal dysplasias that you could print and take with you to educate your physicians. We help with cooling vests and an conditioner through our Treatment Assistance Program. You can learn more at https://www.nfed.org/treat/treatment-assistance-program/. Unfortunately, we do not help with cooling hats and shirts. You might consider contacting the Ectodermal Dysplasia Society in the UK to see if they know a doctor to help you. https://edsociety.co.uk/ Good luck and let us know if we can help you in any way. ~ Jodi, NFED, Director, Marketing and Communications

  2. 3
    César balderrama on June 6, 2020

    Hello, I have the same syndrome, I have sweat glands, I do not have teeth, only two molars and I do not have hair either. I know that there are more people with my condition. to support my family the truth urges me a job since my daughter is suffering from microcephaly please if you could ask me to help with just one job ñara support my family I would appreciate it god bless you I live in Albuquerque NM currently we live with a person who lets us live in his living room please help me get a job where there is no heat

    1. 4
      Jodi Edgar Reinhardt on June 9, 2020

      Hi, Cesar. Thank you for reaching and sharing your story. Unfortunately, we do not help people with finding employment so we are not able to help you. I’m sorry that we are not able to help you in that way. We wish you well in finding a job that works for you. Good luck! ~ Jodi, NFED, Director Marketing and Communications

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