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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.

Isotretinoin is NOT for Children

Last week, Rachel wrote about the warning labels on the brand of isotretinoin (also known as Accutane and other names) that she’s been taking for the past three months, along with Monkey’s interesting interpretation of what one of the warning graphics meant.

Both Cookie (age 11) and Monkey (age 8) have noticed the improvement in [...]

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 [...]

News from Italy: A clinical trial of tazarotene cream

I was excited to listen to Dr. Giovanna Zambruno’s presentation at the UNITI conference this past weekend in Bari, Italy. Dr. Zambruno is with the Istituto Dermopatico dell’Immacolata (IDI-IRCCS), Laboratory of Molecular and Cell Biology in Rome. The title of her presentation to UNITI was “New topical formulation of Tazarotene: clinical trial’s preliminary results” [...]

Walking Attainment Delays in Children Affected With Ichthyosis

Children affected with ichthyosis start walking later than unaffected children.

Based on responses collected from parents regarding 54 affected children, we are able to conclude that children affected with moderate to severe forms of ichthyosis start walking, on average, almost two months later than unaffected children.

Approximately 40% of the children affected [...]

Water, water: Transepidermal Water Loss

Remember back when I wrote about how skin is supposed to work? One of the main jobs that skin does is to keep water inside our bodies.

Our bodies are about 60% water, and membranes isolate every cell into its own little world. The balance between inside and outside is maintained by a complex network [...]

Ichthyosis Research: Updates from FIRST

Back in October, we had three posts discussing ichthyosis research recently funded by FIRST, the Foundation for Ichthyosis and Related Skin Types. FIRST began its Research Grant Program in 2006, and since then, has provided over $1.4 million in ichthyosis research funding.

Our “Fall 2012″ issue of FIRST’s printed newsletter, Ichthyosis Focus, came in the [...]

Ichthyosis Research: Followup to “Standardizing the Names”

Over on Facebook last week, we had a lot of dialogue following our article about the revised ichthyosis nomenclature. We thought that addressing some of that dialogue would be useful here.

(Among other things, that conversation occurred in a technically private group, so only members of the group are able to see it. And because [...]

Putting skin in the game: Skin biopsies

I’m limping around in (minor) pain today, but not for the usual reasons.

Yesterday morning, I visited my favorite ichthyosis researcher for our sixth skin biopsy session.

For a long time, when I was growing up, I really hated going to the doctor. And I reserved special disdain for new doctors taking a look at [...]

Ichthyosis Research: Dr. Roop’s Stem Cell Research

The September 2012 “Research Times” mailing from FIRST, the Foundation for Ichthyosis and Related Skin Types, contained articles updating some ongoing ichthyosis-related research funded by FIRST.

We previously blogged about the new award grant to Dr. Amy Paller at Northwestern University, for her siRNA gold nanoparticle research, and about the work of Dr. Heiko Traupe [...]

This week in ichthyosis — 10/12/12

This week, we tackled the basics of skin anatomy and reviewed a fascinating research project on making ARCI (lamellar-type) mouse models. Camp Wonder is a week-long camp available to children with skin disorders aged 6-18 in Oakland, California. It is completely free to attend, as it is hosted by a marvelous charity called the Children’s [...]