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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.

Rachel’s Misdiagnosis Saga: Lamellar Ichthyosis

As a young child, I was diagnosed with congenital lamellar ichthyosis (now classified as a type of autosomal recessive congenital ichthyosis (ARCI)). I dutifully parroted that diagnosis to any adult who asked (and even helpfully spelled it out). When confronted with skepticism that I didn’t exactly match up with others who had lamellar ichthyosis, I [...]

Recap: FIRST Patient Support Forum in Mahwah, NJ, Aug 4th 2013

On Saturday, I attended the Patient Support Forum in Mahwah, NJ put on by FIRST, the Foundation for Ichthyosis and Related Skin Types. It was the second of four regional conferences offered this year — the last two are coming up in September in St Louis, MO and San Jose, CA. I had a great [...]

What I learned at the FIRST Patient Support Forum in Dallas

I think I’m just about recovered from my weekend jaunt to Dallas. (If you haven’t done so already, check out the transcript of my liveblog of the FIRST Dallas regional conference.)

But rather than just leave you, faithful readers, to sift through my stream-of-consciousness and typo-laden liveblog, I thought I’d write here about things that [...]

Liveblog Transcript: FIRST Dallas Conference / Patient Support Forum (6/8/2013)

Thank you so much to everyone who joined my liveblog of today’s FIRST Patient Support Forum / Regional Conference in Dallas. The views (and participation from online viewers) really exceeded my expectations. Some of the discussion in the room was hard for me to follow (at one point three or four separate conversations started at [...]

FIRST Dallas Regional Conference LIVEBLOG – June 8, 2013

Rachel’s liveblog of the FIRST Dallas Regional conference is now over, but we have made the full transcript available in a new post.

Questions for Saturday’s FIRST Regional conference?

I will be liveblogging the FIRST Dallas Regional Conference on Saturday, June 8. The conference starts at 9:30 AM US Central Time (14:30 UTC/GMT, 15:30 BST, 0:30 6/9 AEST (sorry, Aussies)), so please join me here on the blog during the conference for live updates. You can submit questions for the presenters here on [...]

Why I Am Attending the FIRST Regional Conference

We have a lot of new blog projects in the works, but I wanted to take a few moments today to write about why I am excited to be attending the FIRST Regional Conference (Patient Support Forum) in Dallas, Texas on June 8. (It’s still not too late to register.)

Here’s what I think the [...]

FIRST Dallas Regional Conference, June 8

I’ve booked my tickets for a trip to Dallas, Texas to attend the FIRST Patient Support Forum on June 8. If you are in the Dallas area (or can make a trip out there), please join me at the conference!

The featured speaker is Dr. Moise Levy, a member of FIRST’s Medical and Scientific Advisory [...]

Triangle Skinsational Sip in Raleigh and a bit of FIRST history

Last weekend, I attended the “Triangle Skinsational Sip”, a social event and fundraiser for FIRST, the Foundation for Ichthyosis and Related Skin Types, in Raleigh, North Carolina. The fundraiser was hosted by the Clemmer and Hedley families. The Hedleys’ teenage son is affected with KID Syndrome, and Ellen Clemmer and two of her three brothers [...]