I am 8 years old and have Hypohidrotic Ectodermal Dysplasia.

When you have HED ( Hypohidrotic Ectodermal Dysplasia) you can’t sweat and when you lift your shirt sleeve up and turn your arm over, you can see your veins clear as day. You can’t get really hot because we could dehydrate and get very very sick, because of that we get to have really cool, cooling vests.

At school the cooling vest can help on really hot days and gives me lots of energy until the ice melts then I have to wet and dry the vest and take it to the staff room. I give it to a teacher and ask them to put it in the fridge. We wait  about 20 minutes and then I get the vest and put it on, I might need help sometimes because if you can’t tie knots you need to ask a teacher.

When the weather is cold, it is really good for my skin. And cold can keep me alive and well. If you are like me, cold is freezing. Sometimes I don’t like the cold but it is good for me. It makes me sleepy and freezing and I don’t like getting up out of my bed in the mornings. My mum has to work for over an hour to pull me out of my bed when it is cold outside. I don’t get goosebumps. I like to keep warm on cold days.

One of my favorite activities with HED is being able to build cool stuff out of Lego and get to eat whenever I want. I get to drink lots of water and I can have water at my school desk. On hot days I sometimes open the freezer and sit in front of it because it keeps me cool. My parents don’t like it though.

My eyes get itchy a lot and I don’t have tears, I have oil instead and it is sticky. I lick my fingers and rub my eyes sometimes to make them wet. The optometrist really doesn’t want me to do that anymore though. My nose gets stinky sometimes because I didn’t drink enough water that day. My teeth are really pointy but got covered by the dentist. I call them shark teeth. I have eight teeth all together, two pointy ones at the bottom and 6 at the top. I had dentures once, but they got too small too quick. I can eat pizza anyway.

The worst thing about HED is that we don’t get to play in hot places.

The best things about HED are we get to meet friends and go to lots of different camps and I know most of the people there, and we always get to go straight under an air conditioner or a fan on very hot days at school. We even get to have ice creams when there are heatwaves at home.

HED as recounted by my soon to be 9 year old son. I hope you enjoy it.

With Love & Support,

Tarja Kelly


4 Responses to “I am 8 years old and have Hypohidrotic Ectodermal Dysplasia.”

  1. 1 Nazer (@zerxn) 28/08/2013 at 6:22 am

    Hi I’m from Puerto Rico. I am 22 years old and all your son said is how I feel. Take care of him, this is so hard for a kid.

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