Ectodermal dysplasia

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Jun 3, 2023
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Naturally I don’t recall being a young child. However my parents told me a lot about the first few years of my life. My first summers of life, my parents told me that I would cry all day and sleep through the night, this occurred every day and night. Sometimes I would go missing, to be found under the house lying on the dirt.

My parents were taking me to any doctor they could find due to my constant crying. One day when I was around 4-5 years old, a wise country type doctor examined me and told my parents “this child cannot sweat”. Back then we did not have air conditioning and lived in the Deep South of the USA where temperatures soared in the summer. This explained my crying all day and trying to find a cooler place, such as under our house. As I said, we had no air conditioning and could not afford one either. My parents did not know what to do. Each hour of the summer heat was a struggle for me, and them. For a long time, my parents were not aware of the life threatening heat that I was facing each day. (I urge anyone that is curious about my condition to search the web for Ectodermal Dysplasia).

Somehow before I reached the age of 6, my parents were able to afford a window unit air conditioner. I recall standing in front of that air conditioner a lot. I give God all of the praise, honor and glory for allowing me to live each day of my life without having a heat stroke and dying.

Public elementary school was very hard during the summers as none of the elementary schools were air conditioned. I did have the schools permission to leave my seat for water or restroom breaks anytime I needed. Recess was way hard in the summer, I had to go outside during recess and there was no shade. Even though there was no air conditioning in my classroom, I looked forward to getting back into the classroom where I was out of the direct sun. I have absolutely no doubt that God brought me through those days.

Luckily I was able to attend a middle school with air conditioning when I was in middle school. My high school was also air conditioned. This was a blessing to me that can’t be overstated.

During my teen years, even I did not take my inability to sweat seriously enough. I would drive in the summer heat and no air conditioning, just relying on the wind coming through the car as I drove. I was not even carrying water with me, which I soon found to be my “lifeblood” in the summers.

My first year of full time work soon led me to realize what a relief cold water was and is to me. BTW, we/I have never moved from the deep south to a cooler climate.

My first full time job at the age of 18, was a fire alarm/security alarm technician for our local school district. Out of fear of being terminated, I never told anyone at work about my inability to sweat for the first 10 years. I drove an non air conditioned van from school to school working on the fire and intrusion alarms in the schools. It was during this time that I realized what a comfort an ice chest full of water and ice (along with a spray bottle) was for me. After 10 years I finally told my employer about my ectodermal dysplasia and later received an air conditioned van, although I still had to work in non air conditioned schools (air conditioning did not run in the summers in empty schools). I stayed with that school district performing my usual tasks for 39 years. I then retired and went to work with a large national company where I perform fire alarm detection systems inspections and repairs. I do drive an air conditioned van all over the state performing inspections and repairs for our customers. I do find myself in an non air conditioned complexes or on a roof with temperatures around 95-100 often. I did ask my employer for accommodations over a year ago and yet to receive a reply. I’m not pushing the issue in fear of termination.

So, how do I manage these extreme climates with no sweat gland? I wear a tee shirt that has been soaked in ice water, an “iced cap” purchase from eBay that allows me to fill the cap with ice and wear it, along with spray bottles filled with ice water.

However my biggest comfort and protector is naturally God. HE has always taken care of me and watches over me in a manner that I, nor anyone else could. I know without any doubt that God is the only reason I have survived and been so much blessed during my years. I give God ALL of the praise, honor, glory for blessings me each moment of my life. I have never been or will be anything without God and Jesus in my life!

God bless you,
Philip