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