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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".

Read more about us and this blog...

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

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ARCI in Africa: Meet Dakura, Kweku and Amotalé

Dakura, Kweku and Amotale live in Jirapa, Ghana. Last month, a Ghana News article about them received a lot of publicity. Unfortunately, the headline of the article called them “alligator children” and concluded, “The children are seen as outcasts. People around perceive them as evil, but the mother is seeking help for her children.”

While [...]

Tilting at Windmills on Reddit’s “WTF” Forum

About two weeks ago, as I was about to leave my office, I took a quick glance at Reddit and saw that someone had posted some pictures of a person with lamellar icthyosis, a form of autosomal recessive congenital ichthyosis (ARCI), to the Reddit forum called “WTF”. Since those pictures have been posted, they’ve been [...]

Ichthyosis is No Barrier to Making a Difference

Today, our friend Jeffrey “Kanga” Gridley shares his story. He has lamellar ichthyosis, a form of autosomal recessive congenital ichthyosis (ARCI) and lives in Brisbane, Australia. In addition to his Red Cross work, he is also an avid mountain climber and is currently training to climb Mt. McKinley sometime next year. He aspires to climb [...]

Harlequin-Affected Mom Has Baby!

More on this later, but I just wanted to report the great news that our friend Stephanie, who guest posted a few months ago about being the first woman ever to be pregnant while affected with harlequin ichthyosis, (the most severe form of ARCI), gave birth to her son this evening. She carried the pregnancy [...]

Life with Ichthyosis: Judging By Appearances

Today we are pleased to present a guest post from Kyriaki, a friend from Down Under who we met online. What is it with articulate Australians advocating about ichthyosis online?

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I grew up with people judging me for my looks, especially in summer. Not just when I was older and judged by my peers, [...]

Malawi Baby with Harlequin Ichthyosis has Died

Malawi media is now reporting that the baby born last week affected with harlequin ichthyosis has died. (We wrote on Monday about the baby and the media coverage.) Although the news of the baby’s passing was just published today (Wednesday), the story says that the baby died over the weekend, shortly after being transferred to [...]

Baby With Harlequin Ichthyosis Born in Malawi; Media Frenzy Ensues

Last week, the Nyasa Times reported that in the small lakeside town of Salima, Malawi (Africa), a baby was born, apparently affected with harlequin ichthyosis, the most severe form of autosomal congenital recessive ichthyosis (ARCI). Brenna’s mom shared the original article with me over the weekend, and since then we have become aware of followup [...]

Life with Ichthyosis: A Harlequin-affected Mom’s Pregnancy

Our guest today is Stephanie. She is the author of the blog “With Faith That Will Move Anything” and the YouTube vlog of the same name.

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On April 11, 2012, I married the man of my dreams. He was cute as could be with dimples that made my heart melt and gorgeous brown eyes. [...]

Life with Harlequin Ichthyosis: High School

Hunter is back with us today, sharing her experiences in high school.

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After my middle school experience, I went into high school very guarded and careful. I always kept a barrier up against new people because I was afraid of having them bully me. Ninth grade year was by far the hardest of all [...]

Life with Harlequin Ichthyosis: The Downs of Middle School

Today’s guest post is from Hunter, who is a teen affected personally with harlequin ichthyosis. She is featured on Extraordinary Humans: Skin, and The FIRST Story, and has been very active in spreading awareness and lending support to many of the moms of younger children already featured here.

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I’m so glad to be a [...]