Anna Liberty

A girl who's one-in-a-million

So…Is it Okay for Anna to be in the Shade?

on May 18, 2012

When people first find out about Anna’s XP syndrome, and that she can’t be exposed to the sun, some of the questions that always comes up is “What about the shade? Is she okay under a tree or an umbrella?  What about behind glass?”

The answer is usually no – shade, umbrellas, and regular glass do not block the UV rays. But when we really need to know, we have  a marvelous tool provided by the XP Family Support Group – a digital UV meter.  Isn’t  it cute?

This handy device reads the amount of UV radiation coming from any given direction.  We couldn’t live without it, especially when traveling to new places where we aren’t sure if the windows are sufficiently tinted and when we’re anxious to know if it’s safe yet for Anna to take off her hat at night.

Here’s an example of how it works.  In this first picture, the sun is still up around 7:00 PM and you can see that the meter is reading at 1938.  We strive to keep Anna away from any exposure over 10. So outdoors on sunny days is obviously very dangerous.

After the picture in the sunlight, I took one step to the left in on our back patio, just into the shade. Now that the sun’s rays weren’t coming directly into the meter, the number dropped significantly down to only 177.  But that’a still far too high for Anna to be safe.  This is how we know that the shade isn’t sufficient.

I then took a step inside behind our UV-blocking tinted glass sliding door, and pointed the meter outside.  It read zero!  We are grateful to allow the beautiful sunlight in our home while keeping out the UV rays.

The sun isn’t the only source of UV rays. Many light bulbs can give off dangerous levels for Anna.  For example, here is the UV meter pointed near our kitchen fan light.  It reads 24.  Luckily, down on the level where Anna walks around, the radiation level has dissipated and it’s safe for her. (We should still replace those lights to safe LED lights just in case.)

Now you know another little detail of life with XP.  We’re very grateful to the XP Family Support Group for providing us with the UV meter. And now if you see us waving this little box around in the air, you know why.

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