Australian Ectodermal Dysplasia Support Group

Paul and Jenny Boss – Queensland – Family Story

When our son was born he had 10 fingers, 10 toes, everything was great. As he grew I noticed he wasn’t getting teeth. He would be fine one minute and the next minute he would have high temperatures. As new parents we put this down to teething but the teeth never came.

When he was nearly 3 I went to my local dentist as I needed a check up and I asked him if Jack should have teeth by now, what was wrong, why didn’t he have teeth? My dentist said he “knew of something but it probably wasn’t that, that was worst case scenario. Let’s do some X-rays and find out”

Well we did X-rays and worst case scenario turned out to be Ectodermal Dysplasia. We were given a referral to see a specialist in Adelaide and we set off on the 4 hour drive the next weekend. 

At that time (1998) the internet was new, there really wasn’t a great deal of information out there and we learned what we could and thought we had it figured out.

Approximately 10 years later Paul stumbled on an organisation in Australia called ozED. I quickly rang Andrew and had a great chat. I joined the next conference call and was amazed that there was a lady on there who lived 2 suburbs over from me, she had a son also called Jack and he was the same age. I had never met anyone with ED before so we quickly arranged to meet up.

We also joined the QLD family day and was nearly brought to tears by the ‘little Jacks’ that were running around, Paul and I felt that we were immediately connected to these strangers as we were the same. We joined the QLD camp that year and we learnt more about ED in 3 days than we had in 13 years.

I always say ozED was like a bright light that opened a new world for Jack and us.

Jack is now 27, he has had skin issues, is happily bald and has now had dental implants on the bottom and a denture on the top. We have always encouraged him not to let ED rule his life but to live life and just manage the ED.

So while we have been through worst case scenario we know it wasn’t worst case at all. ED has opened a door to amazing friendships and an Australia wide family for us and Jack and we see it as a blessing to have met so many people.

Jack Boss – Queensland

Growing up with ED was easy, we didn’t know too much about it so basically lived as other kids did. ED didn’t stop me from doing what everyone else did and it was just a normal life. I didn’t have many teeth and I visited the dentist and had dentures but that was just me.

As I grew up I did get picked on at school about my teeth and hair, which I didn’t like. Everyone gets bullied at some point during school and he last 2 years of primary school was s nightmare for me.

During high school I was more aware, about ED and managing the heat. I would get a lot of headaches, blood noses and tired easily when it was hot.

A memorable moment was a fire drill where I had to be outside in the heat for 2 hours, that wiped me out and I knew I needed to know more about ED so I could manage it better. I spoke to Mum and she talked about ED to me.

At 13 we went to our first ozED camp- it was great, one of the bed things about Camp was I got to see people like me, I made new friends and found out I could be a mentor to younger kids with ED

When I was 19 I started the process to get implants. I have them on the bottom and still wear a denture on the top. I love them! I can chew food now and it’s hard to think how I lived without bottom teeth before.

I wasn’t too nervous about the implants and surgery, as my parents had always told me growing up that this would eventually happen. They had prepared me to be aware that it would probably hurt (and it did) but it wasn’t as bad as I thought and it was worth it to have teeth.

Now I am 27, I have an amazing girlfriend and am starting my own path in life. I am more heat aware and do have to manage overheating but basically it’s business as usual. I can do anything everyone else does and I won’t let ED hold me back!

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