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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.

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 [...]

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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Iā€™m so glad to be a [...]

A conversation with my 10-year old about harlequin ichthyosis

Since we spent many hours of our Christmas and New Years’ holiday writing about and responding to “the picture“, it was only natural that our kids asked us some questions. I thought that sharing some of their questions and our answers would help others better understand the facts and our perspective.

Rachel, what’s that picture [...]

Life With Harlequin Ichthyosis: School Daze

Our guest post today is by Shannon, mom to Lauren. Lauren is 8 years old and a Brownie Girl Scout. ————– “If there were no schools to take the children away from home part of the time, the insane asylums would be filled with mothers.” – Edgar W. Howe

After three years of Early Intervention [...]

Life With Harlequin Ichthyosis: Toddler Years

Our guest post today is by De De, mom to Evan and author of the Our Young Warrior Evan blog. Evan is 2.5 years old. ——— The toddler years I had envisioned for Evan are not what we are experiencing right now. Even with all the challenges he faced with his skin and as a [...]

Life with Harlequin Ichthyosis: Ups and Downs in the First Year

Our guest poster today is Courtney, mom to Brenna and the author of the Blessed By Brenna blog. Brenna is 11 months old.

———– When Brenna was first born, each day felt like its own year. The hours dragged and the days dragged as we watched her fight to stay alive, to grow little [...]