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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.

2014 Ichthyosis Conference – An Update from Dr. Choate

Dr. Keith Choate from Yale just wrapped up his presentation at the #FIRSTNFC First Family Conference in Indianapolis. Dr. Choate gave the conference attendees a update about the amazing progress he and his team at Yale have made on the Gene Discovery Project.

Dr. Choate mentioned that they started doing gene discovery at FIRST […]

We’re back!

Hello, readers! For those of you that don’t follow us on Facebook, I just wanted to drop you a note to let you know that our blog is back. On Monday morning, we realized that our blog had become infected with a bit of malware called the “Blackhole Exploit Kit“, and that a bit of […]

This Week in Ichthyosis: 7/26/13

It’s been a busy week!

First off, August is rolling around in just a few days. With August come the next two Regional Patient Support forums: August 3rd in New Jersey and August 10th in Cincinnati. Are you going? One of us will be in New Jersey, once we draw straws on who gets parenting […]

This Month in Ichthyosis: 7/8/2013

We’ve been busy with a bit of a family vacation over the long weekend so blogging has been a bit light. But we wanted to call our readers’ attention to some must-read articles that have popped up.

Over the weekend, Carly had a run-in with a cab driver who refused her service because of her […]

Family Update, April 29

Cookie has been dealing with “mystery abdominal pain” for over a month now. He did not have appendicitis, although he did get the lovely experience of getting an endoscopy and a colonoscopy.

Our current sort-of-diagnosis is that Cookie has irritable bowel syndrome, mixed in with (or perhaps with a side effect of) massive constipation. He’s […]

World Rare Disease Day

Today is the last day of February, and with it comes an annual event hosted by the Global Genes Project. This charity is not specific to ichthyosis, but instead works to raise awareness and promote research and education for all rare diseases and disorders, of which ichthyosis is only one. Well, actually 32.

Today is […]

A Valentine Wish

Happy Valentine’s Day!

Today is one of those holidays that gets mixed reviews. For some, it is the most romantic day ever, full of flowers and chocolate and all things pink and red. For others, it’s a day to tell all their friends how much they are appreciated. And still others choose to ignore the […]

Our Blog Year in Review / Best Posts of 2012

2012 has been a good year for us. Jennifer and I consider this blog and the friends we’ve made and people we’ve educated through it to be one of our best accomplishments for 2012. For many years we had been talking about starting a blog about ichthyosis, and the fall of 2012 was when we […]

Merry Christmas / Happy Holidays!

Merry Christmas and Happy Holidays to all our readers. We’re in Cleveland with our extended family, and hope that your holiday season has been and will be a happy and joyous one.

We’ll return to more substantive blogging later on this week, with some thoughts about packing for long trips.

Giving Tuesday

Here in the US, we celebrate Thanksgiving, a holiday commemorating the survival of the early colonists after a rough first year, on the fourth Thursday in November. We spend the day with family and television specials are all filled with things that we should be thankful for: shelter, enough food, a stable income, friends, family, […]