Find Us On Facebook
Follow Us On Twitter
"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.

The Government Shutdown and Our Family

Today (Thursday) is the second full day of the government shutdown, and I’m already starting to feel a little stir-crazy. As a furloughed federal worker, that means today is the second day that I’m not working and not getting paid. That’s bad.

And my take on the latest media reports is that things aren’t going […]

Epidermolytic Ichthyosis: Hands and Feet?

We’re starting a new project here, and if you have a form of epidermolytic ichthyosis, we’d like you to share with us and our readers how you take care of your hands and feet. We will collect, curate and then publish the responses on our blog here, with as much advice specific to each individual […]

Daily Life With Ichthyosis: Packing for Long Trips

As I write this, we are in the middle of a 10-day visit with the grandparents. And earlier this year, our entire family went to Denver for the biennial FIRST Family Conference, and from there Cookie and Monkey flew on to CSDF’s Camp Wonder for a 5-day camping trip. So long trips are a familiar […]

It’s a series of tubes!

I’m hunkering down from Hurricane Sandy here. Not much to do, really. There was a discussion on Facebook earlier about whether folks with ichthyosis needed any special storm preparations.

I thought the question was a bit silly, myself. I have several months’ worth of cream in the closet. And while I don’t relish the prospect […]

Daily Life With Ichthyosis: Rachel’s Cream Routine

One of my first blog entries here was about my own daily routine. I’ve also written about Glad Cling Wrap and why I always, always, always take a shower in the morning.

But one really important facet of daily life with ichthyosis that I haven’t mentioned are the kinds of cream I use.

My “everyday” […]

Free Aquaphor for patients with ichthyosis from Beiersdorf

Half of the cream closet.

Caring for ichthyosis is expensive. What could possibly be so expensive about skin care, you ask? It’s not like we’re visiting the Clinique counter at Saks every week.

Let’s talk about the cost of creams. (Full discussion of all of the other costs could take up an entire series […]

Daily life with ichthyosis: Bathtime

One of the most important parts of our day is the morning bath. When the boys wake up, they often have trouble walking. Overnight, their feet dry out and any built up skin cracks the minute they stand up. Their weight opens deep fissures in their heels and around the sides of the toes.I have […]