Who am I?

What would I know about HED anyway?

I was born in the middle of winter in a cold European country called Switzerland. Nothing strange there, as many of us Aussies are originally from somewhere else.

My mother found it a little strange that she could never put socks on my feet, as I would start crying and fussing until the offending articles were removed. Even in the thick of winter, she had baby me outside without socks, much to the displeasure to any who saw this.

My Grandmother would be knitting the most beautiful baby garments to keep me warm in the cold of the day. Very soon it was realised I was allergic to wool.

To this day, I still cannot wear wool. Even the softest weave itches so bad I just need to get it off my skin.

My teeth were small and misshapen, I had 4 missing and the rest had to be tamed with braces and plates. My 4 front teeth are now capped to make them look “normal”.

Fast-forward 13 years and, as a family, we decided to immigrate here to Australia.

In summer, I would get unbearably hot and lethargic. Well, everyone seemed to react the same except it seemed to take me a lot longer to work up a sweat. There were spots on my body where I did sweat quite normally but there were also noticeable omissions all over. I only started to “really” sweat after I had my first baby at 31 years of age. Man, that was so strange.

My hair was wispy thin and it took many years of cutting it short to make it appear thicker. I have a perpetual “bad hair day” on the right side of my head.

The same strange hair pattern is also visible on my legs. My left leg is virtually smooth, my right on the other hand, will resemble a rainforest in practically no time at all.

Where I was aware of all my peculiarities, I never actually had a name for any of it until I had boys. Then, when we went to the geneticist to have them diagnosed, she walked in to the room and diagnosed me first.

“Yes, you have a condition called Hypohidrotic Ectodermal Dysplasia and we believe you gave this to your boys.”

So there you have me, Tarja Kelly in a nutshell. Hope you enjoyed the read 🙂

With Love & Support.



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