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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

Life With Ichthyosis: Meet the Teacher

September is here again and the kids are going back to school. Every year, every new teacher, we go through what we call “the short version.” Sure, the school has the 504 plan and the highlighted pamphlet from FIRST (“Ichthyosis: A Guide for Teachers and School Personnel“), but the reality for us is that it usually takes an incident before the teachers really get what we’re dealing with.

As I mentioned in my last post, the type of ichthyosis our kids have is not obvious on first glance. We spend a long time in the morning to make sure they are comfortable and mobile, so in the morning when the teachers first see the boys, they are usually at their best. Unfortunately, that makes it too easy for a teacher to assume that the boys’ presentation in the morning represents the normal state of affairs.

During open house, it is usually a bit crazy, with 25 other parents waiting to meet the teacher. Coming at the end or the beginning works best, or making sure that we get the email address, then I can answer questions later. When we meet the teacher, we tell them the following:

Short version:
1. They have fragile skin.
2. They overheat very quickly over 80 degrees.
3. They get dehydrated very easily and so need access to water or other liquids.
4. They have trouble with fine motor skills.
5. Handwashing means 15 minutes of soaking plus a new layer of cream, and don’t ever use hand sanitizer on them because it burns.

It’s hard for us to convey everything that the teacher needs to know in a short conversation. It might seem that we’re overprotective, helicopter-type parents. For new teachers, it usually takes a bad injury or overheating incident for the teacher to see that we’re not crazy parents. On Cookie’s first day of kindergarten many years ago, he tripped on the sidewalk in front of the school and had large layers of the skin on his leg sloughed off as a result (with blood everywhere). It would have been horribly Machiavellian if we had planned it, but we didn’t.

If we have more time, we use the slightly longer version:
1. Ichthyosis is a problem where the waxy layer on the surface doesn’t form correctly.
2. Without the keratin barrier, the skin isn’t waterproof like normal skin.
3. Because the skin can’t hold water, water evaporates off 4-7 times faster than normal skin.
4. When water evaporates, it takes body heat with it.
5. Too much water loss means that they are constantly dehydrated.
6. More calories are needed to maintain body temperature, and they need more fluid to replenish what evaporated.
7. The body tries to hold water in by growing extra skin layers.
8. Because they are dehydrated, there isn’t enough moisture left for sweating.
9. Because their skin is thick, they are basically wearing an extra layer of clothes.
10. In the heat, they are overdressed and dehydrated, so they can’t sweat to regulate their temperature, and they promptly overheat. In very warm situations, this can mean heat exhaustion or even heat stroke.
11. The extra layers of skin are broken and fragile. As they dry out, they get paper cut-like cracks in their hands. This limits hand strength, mobility, motor skills, and means that getting them wet or touching hand sanitizer hurts a lot.
12. Normal walking around is generally fine, but if they fall or bang against something, they can get bloody injuries where someone with normal skin would only get a bruise.

But that can often be overwhelming.

So, readers — does this sound like information overload?

6 comments to Life With Ichthyosis: Meet the Teacher

  • Kitty

    J, I wasn’t aware of your blog. Thanks for the map to this treasure. I look forward to reading it later.

  • Leandra

    Argh! My browser thinks the FIRST link is malicious and won’t let me reference it. Is it the short form that FIRST recently posted to the FB site?

  • Leandra

    Thank you for posting this, Jennifer. We have been struggling at the beginning of the school year as well with teachers not really getting it. I am concerned about overloading them with info, but even the short-and-sweet version doesn’t seem to be getting enough attention. I am certain they think I’m a helicopter mom and no longer mind the designation. 🙂 I didn’t know that the reason for the lack of perspiration was dehydration; rather, I had believed it was the thickened scale unable to allow passage. Makes sense…a combination maybe?

  • Opal Harris

    As a teacher, I appreciate the explanation you have provided. I understand the affliction only because I have been around you, Rachel and the boys. I have seen first hand what you both do for their skin care. You have stated it as clearly and simply as possible. What I do not understand is why other educated adults do not understand the seriousness of this? Thanks again for providing an explaination that the normal population can understand.

  • jennifer

    Leandra, it is a combination of the two. In some types of ichthyosis, the thickened skin literally blocks the sweat ducts and sweat cannot pass to the surface. In all types, dehydration is a constant problem, and the sweat glands don’t kick on because there isn’t enough water in the system to leave the blood vessels and mix up in the sweat glands and then evaporate off. With us, the boys will sweat, but by the time they do they are already overheated and potentially in danger. I have seen Rachel cut the grass and promptly drink a 2 quart jug of Gatorade and still be thirsty.

    Also, smaller bodies have lower surface-to-body ratios, so they lose water on the surface faster.

  • Lynette

    This is a great way to explain the science in simple terms. I’m printing it and keeping it with me.

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