How did I get Hypohidrotic Ectodermal Dysplasia?

Most nights I don’t hear anything from the boy’s room after they go to bed. Sebastian reads for a while and Matthew  is straight to sleep.

But there are some nights where they talk for a long time, giggling and chatting about boy stuff.

I heard them the night before last, and suddenly decided to listen to their actual conversation because it sounded very serious. It was, very serious indeed. Matthew asked his big brother how they got Hypohidrotic Ectodermal Dysplasia from me. The answer was something like this.

” A while ago mummy didn’t have us and she was different but she didn’t know she was. She had HED but nobody told her and nobody knew, not even her. So when she saw daddy and they married they wanted to have babies.

They had me and I was a very hot baby, then they had you and you were a very hot baby too. They still didn’t know what we had though. But we went to a special doctor who told us we had HED. ”

This is amazing, I was listening to a story I hadn’t heard before but it goes on…

“How come it is us boys then?” Matthew asks (makes sense to me, seems unfair that only the boys have it)

“Well, mummy only had enough for you and me and Nathanael but she ran out and that’s why Siobhan hasn’t got it.”

“Why have I got skin and Nathanael has skin and you don’t then?”  Asks Matthew.

“I don’t know, it’s not fair though. You were born with it and I was lucky, I didn’t get it.”

Matthew ends the conversation with “I wish I would snap out of the egg so I can have donuts like you…”

And with that, they say good night to each other and go to sleep. I am struck by the simple way he explained Hypohidrotic ED to his little brother, I am also hit by Matthew’s wish that he wasn’t allergic to egg anymore. He has to sit out so many treats because of that allergy. Not many people cater to egg, it is the nuts that get all the attention.

I wonder what their next adventure will be before bedtime.

With love and support

Tarja Kelly


8 Responses to “How did I get Hypohidrotic Ectodermal Dysplasia?”

  1. 1 Jessica Gilbert 08/03/2011 at 12:47 pm

    This is such an amazing story! I would love to learn more! Would you mind if i interview you? Ten questions, you don’t have to answer them if there too personal but I would love to learn more about Ectodermal Dysplasia!
    Thank you, Jessica Gilbert

  2. 2 Jessica Gilbert 08/03/2011 at 12:49 pm

    1) How long have you been affected by Ectodermal Dysplasia(ED)?

    2)How does it affect your family?

    3) Had you heard about Ectodermal Dysplasia before your son/daughter was diagnosed?

    4) How did you know something was wrong? Or what made you think to go to the doctors?

    5) What tests were done?

    6) What type of ED does he/she have?

    7) Who diagnosed him/her? And/or who provided his/her medical treatment?

    8) How often do you visit the doctors?

    9) What was your initial plan when your son/daughter was diagnosed?

    10) Did he/she receive any treatment?

    11) Did you know you were a carrier of ED before their diagnosis?

    12) During your experience did you meet any other families in the same situation?

    • 3 tarjakelly 09/03/2011 at 10:31 am

      Hi Jessica, of course I’ll answer 🙂 May I ask you, where will this be used Please? Other than the usual worries about misuse of answers, I have no problems helping education about ED.
      1) I have had ED all my 40 years, having been born with it.
      2) We have to be cautious about temperatures and some foods but other than that we are a “normal” faimily.
      3) No, had never heard of Ectodermal Dysplasia before.
      4) I believe I answered this question in one of my early blogs. 🙂 too long to answer here.
      5) What kind of tests? We had a genetic test but nothing came of it. Our diagnosis was visual as their apperances are synonymous with ED.
      6) My three boys have Hypohidrotic Ectoderal Dysplasia.
      7) The GP gave us the name, My husband researched it, a geneticist diagnosed it.
      8) We visit the GP when we need to, some onths every week, then others not for a few months. Our Paediatrician we see every 6 months.
      9) I am sorry, don’t really understand this question. Our initial plan was to keep on living life to the full. The only thing that changed from birth and the 18 months before diagnosis, was we finally had a name for what was going on with our children.
      10) Dental and Dermatological treatments are ongoing.
      11) No I didn’t know I was a carrier.
      12) Not until our son was 4 did we “find” another ED family in Australia. There are any others and we have had contact and conferences as well as family days since. Every family is different though so the situations are many and varied. We all support each other as much as we are capable of.

      I do hope this was of some use to you 🙂 Sincerely yours, Tarja

  3. 4 Ken 11/10/2011 at 5:29 am

    I too have Ectodermal Dysplasia. I know exactly how it is. We just have to keep strong and know we are unique and sometimes that is a good thing! If you ever want to chat you have my email 🙂 send me a message.

    Bless ya

  4. 5 Dana Flannery Copywriter 29/12/2012 at 10:52 am

    Thanks for sharing on the Talk About Creative Facebook wall. I’d never heard of it before so I learned something 🙂

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