Yesterday, I wrote a bit about our wonderful experience at Disney with three heat-intolerant children. Today, my friend Shannon Sagona is our guest poster, here to tell us about how Disney changed their pass for disabled guests. Shannon is a personal friend of mine, not affected by ichthyosis, but a mother of 3 and a [...]
It’s been a few years since we went to Disney, but when we went, it was at the worst possible time of the year for a family of heat-sensitive small people. But you know what? Disney was fantastic.
In 2010, FIRST, the Foundation for Ichthyosis and Related Skin Types, held their biennial conference in late [...]
We’re seeing a picture of a baby with harlequin ichthyosis “going viral” on Facebook. Just like about 10 months ago. This won’t be the last time it happens, either.
The caption to the most recent viral idiocy, posted on September 20, says, ” 1 Like = 1 Pray / 1 Share = 2 Prays / [...]
ISG in the UK co-sponsored an “online clinic on skin conditions” that’s taking place this week. It’s still going on, and there are some worthwhile and interesting responses now, but Jennifer and I think that the forum was marred by the inclusion of a hypnotherapist on the panel of medical experts.
In one of the [...]
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 [...]
While updating our blogroll links, I noticed that Megan’s blog has moved to a new address, and that I missed a letter she wrote about being a counselor at Camp Discovery.
Sometimes I think I use too many superlatives when talking about writing about ichthyosis, but I really think that Megan’s letter is a “must-read” [...]
The morning session for the UNITI conference in Bari, Italy just ended.
I, personally, got a lot out of the last session, a presentation by Dr. Judith Fischer of the Institute for Human Genetics, University Medical Center Freiburg in Germany. Dr. Fischer apologized to the audience, but she presented in English (with someone in the [...]
The Italian Ichthyosis support group, UNITI (Unione Italiana Ittiosi) is having a meeting on Saturday (June 22) in Bari, Italy. This morning on Facebook, our friend Les Avakian posted that the conference will be livestreamed.
Bari, Italy is in Central European Summer Time, which is UTC/GMT +1 hour. The conference starts at 10:00 AM CEST, [...]
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 [...]
We wrote today’s guest post for Carly’s Ichthyosis Awareness Month project. If you’re not directly connected with us on Facebook, you can see some (relatively) new family photos which we haven’t shared with our blog readers.
If you’re just joining us, take a look at our recent posts about our family’s “Cherry Blossom Death March” [...]