The Eyes

When a child has Hypohidrotic Ectodermal Dysplasia the chances are that the eyes will be affected as well. This is in either the production of the oil or the tears, in many cases either or both are minimised or completely absent.

Sebastian has dry eyes, he has no tears. He is lucky though, he has the lubricating oil. He has glasses for reading. We should be giving him eye drops every day to “wash” his eyes but he evades it as only a 9 year old boy can. By the time we notice he went under our radar, it is after bedtime and he is fast asleep. Foiled again!

Matthew also has dry eyes, no tears but oils. He comes to us to have drops when he is comfortable in his skin to notice he is “itchy” on his eyeballs. Very sporadic but at least we are able to do it. Matthew wears his glasses all the time, he can’t see well without them.

Nathanael, his eyes are different to the other two. He has no tears in his right eye but his vision is +4 (I have still not worked out what this means) he does have tears in his left eye but it is virtually blind at +6. He should be wearing his glasses all the time but he only puts them on at school while he is in class.

Just recently I found out that he should be getting drops three times a day because the cornea was dry and it inhibits his vision further. He lets us do it no problem, as long as he has two paper tissues ready and a big hug from me when he’s done 🙂

Lately his eye has been getting weaker and I am worried he will end up being blind in it. He couldn’t see the largest line with his glasses on yet at home he will cover his good eye and tell me everything he sees.
Last Sunday, I was listening to a speech at a competition where the speaker told the story of his 7 year old self, standing in the school line, memorizing the eye-chart so he could pass the eye test with his blind eye. I am worried that Nathanael is memorizing the things in the house so he doesn’t have to admit he is half blind.

We are supposed to patch his good eye for two hours every day. It worked somehow in the holidays but then it just vanished in a flurry of skin issues.  It is so hard to explain how we could possibly “forget” to do the tears and the patching along with so many other things and rest assured, I blame myself all the time that I am not doing everything possible to make them comfortable and “fix” them. When we have the skin sorted, we look after the eyes, simple really but it sounds absurd. 

Just recently I was asked if there was any way I could drop something from our night-time routine so the kids could all be tucked up in bed by 7.30pm. I had to try very hard not to laugh and in my most calm yet facetious way answered that I would gladly drop dinner and homework in order to cut the hours back a bit. ….they didn’t get it.

So, to cut this long story short, have your Ectodermal Dysplasia Child’s eyes checked as soon as you can. The added moisture from eye drops helps more than we can ever measure. There will be a time when the kids will start asking for them without prompting.

Playing the DS with his good eye patched

With Love and Support,

Tarja Kelly



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