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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.

Ichthyosis Awareness Month – 2013 Edition

Welcome to May! This month is dedicated to raising awareness about ichthyosis. This looks to be one of the most active Ichthyosis Awareness Months ever! Here are the goings-on around town we’re aware of:

FIRST, the Foundation for Ichthyosis and Related Skin Types, is publishing member stories throughout the month of May. The first “personal insight into the lives of individuals and families touched by ichthyosis” is from Cynthia Bremmer, who writes about living with lamellar ichthyosis. (Several of the international groups have also started talking about this series!) Expect a new entry every Monday-Wednesday-Friday for the entire month! And we know that FIRST also has a bunch of fundraising and advocacy events scheduled for this month. (Hopefully we’ll see our friends getting some time in front of the TV cameras on Friday morning — stay tuned!)

Our friend Carly Findlay is also hosting an extensive series of guest posts on her blog, amplifying voices and faces through blogging. We, of course, are big believers in the power and reach of blogging, and we were happy to contribute to her series there. Carly also made an “It Gets Better” video, talking about ichthyosis and appearance.

Brenna’s mom, Courtney, has also posted an amazing video featuring children with ichthyosis for Ichthyosis Awareness Month. Courtney’s blog post about the video (and supporting FIRST) is a must-read.

Evan’s mom, De De, also blogged about the start of IAM. And Stephanie has a lot going on in her life (she’s started having contractions) but she also mentioned IAM on her blog.

We’re excited to see all of the activity for Ichthyosis Awareness Month. Let us know if we’ve missed anything!

3 comments to Ichthyosis Awareness Month – 2013 Edition

  • Thanks for the mention :)

  • Mike Brown

    I’m 66 years old. Been living with this since birth. Just finding more out about this. Need some help in researching Mike

  • Mark Alice

    I was born with Ichthyosis Vulgaris over 60 years ago. I just started using the drug Acitretin 25 mg.
    generic for Soriatane 25 mg. One pill a day, and in 45 days I have the skin of a baby. It costs about
    2,000.00 for 30 days of meds. You can not use it if you plan to have children. You need to get your
    blood tested about once a month. So far, so good.

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