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Monday, May 14, 2012

Are You Comfy in YOUR Own Skin?

Note:  This is a replay of an older post I’ve updated in honor of Ichthyosis Awareness Month.

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Peter is 6. 

He likes to ride his scooter, wrestle his brother, build things, color, run, jump, and do all the other things boys like to do.

Oh yeah, and blow things up (imaginary things, of course).

He often stops to scratch. 

In fact, itchiness is a constant distraction for Peter.  You can even catch him scratching in his sleep.

 

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You see, his skin doesn’t shed the way yours does. He has Lamellar Ichthyosis, a rare genetic condition characterized by thick, dry, scaly skin.

 

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He wears heavy non-water-soluble ointments over most of his body to prevent his skin from cracking and to protect him from infection. Medicated creams burn, but they also help remove some of the scale. He can’t sweat over large parts of his body, so overheating is a very real danger in the summer.

Like a butterfly hidden in its cocoon, Peter’s beauty is hidden by his skin. Help us to take away the stigma associated with this condition. Help us release the butterfly by learning more about the challenges Peter and other kiddos (and adults) like him face everyday.

May is Ichthyosis Awareness Month, a time when we try to help people better understand this little known and often misunderstood condition.  For the remainder of this month, I’ll be blogging about how Ichthyosis impacts Peter and our family every day.

For more info about Lamellar Ichthyosis, please read some of my previous blog posts on Peter’s condition. And please visit FIRST, the Foundation for Ichthyosis and Related Skin Types website. Consider making a donation…funds go towards research for treatment of all different types of Ichthyosis.

2 comments:

  1. Hi
    My name is Jenna and I came across your site. Your kids are precious miracles, special gifts, handsome princes and beautiful princessess They are cute earthly angels. Peter is a smilen champ, inspirational hero, courageous fighter, and a brave warrior. I havemild Itchithyosis, which comes from my bone disease, which is from the x chromosome.
    I was born with a rare life threatening disease, developmental delays, 14 medical conditions.
    http://www.miraclechamp.webs.com

    ReplyDelete
  2. Hi Jenna,
    Thank you so much for sharing your story.

    ReplyDelete

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