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Monday, October 4, 2010

Are You Comfy in Your Own Skin?

ichthyosis awareness button 2010

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.

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.

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.

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This is Ichthyosis Awareness Week, a time when we try to help people better understand this little known and often misunderstood condition. I’ve blogged a bit about this in the past, but this year, in an effort to help join people who have normal skin with those with who have not-so-normal skin, I’ve got a couple of reviews lined up of products that can benefit you even if you don’t have trouble shedding your skin cells…and a super giveaway planned, too.

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. Grab my button for this week to help spread awareness (and get an extra entry in the giveaway coming up):

ichthyosis awareness button 2010




5 comments:

  1. My son doesn't have that, but he suffers from eczema and he itches all the time form allergic reactions. Mainly some kind of allergy that we don't know what it is. he is just always itching. So, I kind of understand.

    ReplyDelete
  2. I just finished reading the book: The Coconut Miracle by Bruce Fife.
    You might enjoy reading it. I got my copy from the library.

    It discusses dry skin and a few other items. It was very intresting.

    I started drinking 10 ounces of coconut milk and the hard calouses on my feet went away without me doing anything and my sons dry bloody hands healed.

    Just a thought. Take care.
    Amy

    ReplyDelete
  3. I'm grabbing the button and sending you all a hug! So glad you shared!
    hugs!!

    ReplyDelete
  4. Rodna,
    I sympathize, eczema can be a real pain, literally. I hope you are able to find out what his allergy is.

    Complete Knowledge,
    I'll look into that. Diet can have a tremendous effect on the skin. While I can't see how coconut milk would help him shed his skin, it might help make it more supple. And it probably can't hurt.

    Sister Tipster,
    Thank you, sweetie!

    ReplyDelete
  5. I put your button in a post on my blog. I'm not entering the giveaway but am directing others there. I have dry skin and occasional eczema (which at times seems unbearable). I just can't imagine living with Ichthyosis. Peter looks like a happy boy!

    ReplyDelete

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