One of the challenges that I face in my quest of Getting Fit is the fact that I am affected by Hay Wells Syndrome (HWS).
Learn more about Hay Wells Syndrome at http://nfed.org
Hay Wells Syndrome (HWS), also known as anklyloblepharon-ectodermal dysplasia-cleft lip and palate syndrome (AEC) is one of several ectodermal dysplasias (ED) syndromes that affects structures that arise from the ectoderm as well as structures that do not. Considered a complex syndrome, HWS can affect hair, skin, teeth, nails, sweat glands, as well as other structures. HWS is typically classified by cleft lip and palate as well as fusion of the upper and lower eye lids at birth.
HWS is a congenital birth defect, meaning it is present at birth, and is a dominant genetic trait.
Hay Wells Syndrome affects my workouts in two key ways.
First, as with many individuals affected by any of the Hypohydrotic Ectodermal Dysplasia syndromes, I have diminished ability to sweat.
I was recently tweeting with @bookieboo (I’ve been following the #mamavation hazing and supporting the applicants by doing the exercises), when she tweeted me that she had just read my bio and had previously thought I was a cancer survivor. I get that a lot.
Anyway, I explained that I am affected by Hay Wells Syndrome. She tweeted she read all about it. And then she tweeted this:
The answer? The sweat isn’t produced. My sweat glands are either reduced in number or do not function normally. Either way, I just don’t sweat like most people. In fact, I rarely sweat at all. In 2008, I participated in a “sweat test” study, and I produced about 15% of the typical amount of sweat. I was completely unable to sweat until I hit puberty. I don’t know what changed, or why puberty made a difference, but since then, I am able to produce a minimal amount of sweat at the small of my back and at my temples under extreme heat or extreme physical activity.
And I mean extreme.
Second, I have very low saliva production. Which means during workouts, my mouth gets very dry and my saliva gets very thick. As in nearly gag you thick.
Of course, the diminished ability to sweat and the low saliva production are issues that I have dealt with all of my life. So, I have to take precautions when I’m going to be in the heat or when participating in strenuous activities that may elevate my body temperature… i.e. exercise.
What precautions do I take?
Our elliptical is in the basement. We put it there purposely, as the basement is generally several degrees cooler than the rest of the house.
I keep lots of fluid to drink within reach. I typically drink 48-64 ounces of water during a 30 minute elliptical workout. And since I don’t sweat, guess where all that water goes. Yep… I pee a lot!
Sweat cools the body through evaporation, so I use a spray bottle and wet cloths for the elliptical. I keep the spray bottle filled and wet a washcloth and a bandana before I get on the elliptical. The wet washcloth goes on my head and the bandana around my neck/shoulders intermittently during a workout. I use the spray bottle to mist my head, neck, arms, and sometimes back during the workout.
If I plan to be outdoors during the heat, I have a “cooling bag” that I keep for Mister (who is unable to sweat at all), and can access the stuff in there. I always have a temporal scanner thermometer in my purse or in the diaper bag. In the cooling bag we keep a portable battery operated fan, several spray bottles, a cooling blanket (which works off the evaporative property), and a cooler bag that has baggies of frozen wet wash clothes and ice packs.
I have also been known to run my t-shirt under the faucet and put it back on when I’m going to be outside.
This is also one of the reasons why I’ve started adding strength training to my exercise routine. I know that the more muscle I have, the easier it will be to lose weight and keep it off. I’ve added jumping jacks, crunches, pushups, lunges, squats, bicep curls, tricep dips, planks, and several other exercises to my exercise dictionary.
In short, exercising with Hay Wells Syndrome is a challenge… but not one that cannot be overcome. I just have to listen to my body, and take breaks when I start to overheat.
What challenges do you face in your quest for fitness?
Colleen Shibley says
WOW I’ve never heard of that. Sounds like you have a good system going and so awesome that you are able to get in some fitness!
Barbara Platt says
Be careful and don’t overdo it. I sweat a lot.
Stefani says
When I decide to start exercising, I tend to lose the motivation to stick to a workout plan. I am one that likes to see fast results.
Maggie says
Kudos to you! You are obviously extremely motivated and I think your positive attitude is great – you are facing your challenge head-on — you are an inspiration to me Virginia!
Kimberly says
Wow! I have never heard of this before, nor did I know it was possible NOT to sweat. I appreciate you taking the time to educate people on this condition.
I’m realy sorry that you have to deal with this. Its good to know that you have found ways to get around this and keep yourself healthy.
Keep up the great work!
Candace says
I think you rock for busting tail to workout with the hardship of not sweating. That’s sheer dedication right there!
Julia says
WOW. I didn’t know any of that. Good for you for finding such good solutions and keeping up with the exercise.
valmg says
Wow! You go through a lot! My biggest challenges are motivation after a long day at work and finding time, which is certainly nowhere near as challenging as what you face.
Michelle jadaa says
I love your positive attitude with all you deal with!I have fibromyalgia so apart from overwhelming fatigue i get a lot of pain plus the joy of medicines that have the side effect of weight gain lol.But like you its a daily challenge to find that balance and really really listening to your body that works best.
Thank you for sharing about your condition,its really good to learn about other peoples challenges and realise that all of us are unique:)
Paula says
You’re awesome to make sure you’re taking care of yourself even with issues to take care of. So many people adopt the “I can’t attitude” and never fix themselves. My mom had that attitude and she never got better and died too young. I refuse to do that to my kids.
You’re rocking!
Crystal says
Wow, I’ve never heard of that before. I love that even though you’re faced with these challenges, you keep going.
You go girl!
Coco says
It is so inspiring to see how you took a difficult issue and figured out how to work (workout?) around it, instead of letting it stop you. I sweat alot, and still get overheated on runs easily, so I may take some of your tips. The cool/wet washcloth is a great one that I try to remember.
Tiff says
Is it weird that I think it’s totally interesting? So will you start to fever and get sick if you can’t rid of the sweat since your body doesn’t sweat to try to cool your body down? Thanks for all of the information. Knowledge is definitely power, and you sound well versed.
Karen says
Kudos to you! Here I am, along with so many others, looking for every excuse in the book not to exercise. And there you are, making adjustments so that you CAN.
Tee says
Wow, you actually encouraged me to get fit! Thanks for the positive and motivating post. You go through a lot to stay fit. I really don’t have any challenges … other than being tired (lame excuse!). My husband is actually running a marathon today. I hope to start training with him so I can run a 5K. Wish me luck. Take care!
Louise says
WOW, I sweat for more than the average person. It just pours out of my hands.
This was an encouraging post, and made me remember I need to work harder to be “fit” Thank you!
Kara says
My 2 year old has hypohidrotic ectodermal dysplasia and I am struggling with educating his daycare on overheating. Our first step was in getting a fever protocol which included Tylenol before any fevers spike. Now we are trying to safely encourage them to let him participate in regular activities. We all have so many questions and are learning as we go. Your entry gives me great hope. THANK YOU for taking the time to share your story for all of us searching for answers!!!!
Beeb Ashcroft says
Thank you for sharing your story Virginia!
Tatianna says
I’ve never heard of this condition before, but reading your story is very inspiring. I think you have a great challenge but you are doing a good job at pushing forward and still staying fit.