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?