Tuesday, February 7

Ectodermal Dysplasia

Most people say ecto... what when they here me say it. For me it was a relief and a curse the first time I heard those words. Relief because that means that what I have been dealing with all my life has a name, a curse because my son is now going to have to deal with it also. You are probably all wonder what the hell I am talking about so here is a great website that has loads of info. Sometimes I go to that site and I think to myself well it could be worse and others I say why us? My son and I are affected by an x-linked recessive genetic disorder. Our disorder affects our teeth, nails, and sweat glands. Most people would never notice that something is wrong with either of us. But let us spend more than 2 minutes with a good dentist and he is full of questions. We have NO enamel on our teeth. This makes are teeth smaller, weaker, and sensitive. My son's front teeth are extremely small and tonight I notice that one side has almost completely worn down to the gums. I feel horrible. I feel like I have cursed my child. I remember what it was like growing up and being called names. I would give anything for my son to not have to go through what I had to endure. I will take him to the dentist but at this point they are baby teeth and they really try to focus on adult teeth. Not really sure where I was going with this post but I guess if I get the word out and more people are informed maybe it will make a difference in my son's life!

5 Comments:

Blogger Alison said...

We're all here to listen....

9:01 AM  
Blogger Kim said...

I completely forgot about this and your teeth......

11:21 AM  
Blogger Fern Bourrie said...

Wow, I have never even heard of this. Thanks for the link and public awareness is a must!!

11:33 AM  
Anonymous Anonymous said...

i've never heard of this. will they eventually crown the teeth to save them?

2:01 PM  
Blogger Beanhead said...

BSTS: once his adult teeth come in they will crown them all.My problem was that my adult teeth in the front were crushed inside the gums and had to be removed. Here came bridge work and literally no front teeth until a week before my sister got married in my senior year in high school. I take him in on monday to have xrays and to make sure his asult teeth are okay in there. I know that when people look at him they will ever know but right now it is a knife for me because I don't want him to get teased.

3:36 PM  

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