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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.

2014 Ichthyosis Conference – Day 2, Morning

After writing the last entry, I collapsed in bed to get a whole…um….five hours of sleep before my alarm went off at 6:15. By 7, I was back in the clinic, helping families get to their appointments. This morning was even more challenging than yesterday. Many flights came in during the wee hours of the [...]

2014 Ichthyosis Conference: Day 1

Wow! What a great day!

We arrived in Indianapolis yesterday afternoon after a 5 hour ride with some beautiful sunshine, only to have the heavens open on our heads as soon as Rachel ducked out of the car. Fortunately for the rest of us, parking was in the garage and the entry to the hotel [...]

In Case You Missed It: Recently From FIRST

During the past couple of months, have you been keeping up with what FIRST, the Foundation for Ichthyosis and Related Skin Types, has been doing online?

Things are ramping up for FIRST’s 2014 Family Conference in Indianapolis, from June 20-22. FIRST published some new Youtube videos — there’s a long version and a short version [...]

Hypnotherapy and Ichthyosis

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 [...]

Let’s Talk, In All the Wrong Ways

We are excited to have SooAnn Roberts Pisano join us today! SooAnn is the mother of two boys with two different forms of epidermolysis bullosa and is an active voice in advocacy for those with disabilities.

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We’re all guilty of doing it. There might be at least one occasion that stands [...]

Jennifer’s updates from this morning’s FIRST Patient Support Forum in Mahwah, NJ

Jennifer See’s updates from the FIRST regional conference in Mahwah, New Jersey on August 3, 2013 [...]

Camp Wonder: Rolling With The Punches

Last week, Cookie and Monkey had a wonderful time at Camp Wonder. They got to see some old friends and make several new ones, and had a chance to do things they ordinarily wouldn’t, such as drive a speed boat! But more on that later. For now, I want to share a specific tale about [...]

Off to Camp Wonder, or The Trials of Travel with Skin Disorders

On Sunday, we shipped Cookie and Monkey off to Camp Wonder, a special camp for kids with rare and severe skin disorders. Both boys were really looking forward to camp this year, which will mark Cookie’s fourth year in a row attending, and Monkey’s second. But before we can talk about how awesome Camp Wonder [...]

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.