I am almost 5 and I have Hypohidrotic Ectodermal Dysplasia

I interviewed my nearly 5 year old son for this. I had the questions simple and I wrote his answers as he said them. All my questions are in italic, his answers are normal writing. I hope you like this little insight into the workings of a small boy with HED.

Do you know what makes you different to other kids?

Because I have skin.

What kind of skin?

Itchy skin, and mummy gives me medicine.

What makes your skin itchy?

When I stay home all day I get itchy. When I go out I get itchy.

What about your teeth?

My next teef  (tooth) is coming out. The shark teef is coming out next in my mouth. It is pointy, look at my teef, they is pointy.

Do you know what Hypohidrotic Ectodermal Dysplasia is?

Is that show power rangers? I like to watch power rangers.

(I explained the words to him, his reply was) Hpohypotic makes me hot.

What do you feel when you get hot? Do you like it or not?

I don’t like it because it gets me hot. I tell you to turn the air-conditioning on.

What is your favorite thing about you?

 My teef

What don’t you like about you?

I don’t like my knees.

Why not?

Because they are sore. They hurt me.

This is where he asked if he was finished, gave me the biggest grin and hopped off the chair. High five’d me and went to his room to finish playing a computer puzzle with his twin sister.

My number 4 child has severe eczema which is affecting his intestines as well. This gives him severe discomfort when having to pass waste through there. He is a tough little cookie and he mostly sleeps through the pain, even though he will be crying out through the night. He also wears glasses (when he feels like it) to correct a +6 reading of his Eye on the left and a +4 on his right. I still have to work out exactly what that means but I was told, had we not picked it up last year, he would be virtually blind in his left eye now. Patching and glasses have helped tremendously and he is now able to see and recognise things he never could with that eye.

With Love & support,

Tarja Kelly


6 Responses to “I am almost 5 and I have Hypohidrotic Ectodermal Dysplasia”

  1. 1 Trudy 18/06/2010 at 12:50 pm

    I liked his version. My son is almost 5 and likes to sleep with ice packs.

  2. 3 Heather James 19/06/2010 at 10:22 am

    really brings to light what you are all going through, the kids especially sorry to hear he is in so much pain, I do hope they find a way to help him with this xxx love going your way xx Heather

  3. 4 Manda Shortman 26/06/2010 at 8:31 am

    This is so lovely to read & hear a childs side of things. Toby (7) keeps coming downstairs atm & wants to sleep on the laminate floor or the leather sofa cos thye’re cold & a lot more comfortable for him xx

  4. 5 Carrie lopez 19/03/2014 at 1:51 am

    I am astonished that we are going through the same thing. I have 4 kids. My boys have only their teeth affected the worst. My oldest has aspergers and my 10 year old boy has hearing problems and the heat intolerance. My youngest daughter is affected the worst. She has extreme eczema , nothing heals it, she has a bladder of an 80 year old, extreme allergies, her teeth, she has hipohidrosis. But I am reading your entry and I am quite amazed.

  5. 6 Carrie lopez 19/03/2014 at 1:53 am

    Oh and my youngest has extreme knee pain too. Screaming at night and sleeping with ice packs. 🙂 We live in the Mojave desert of California so it is not the be at place for her HED and the heat. But some of the top doctors. So give or take I guess

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