Tuesday, October 6, 2009

Ichthyosis Awareness Week

This week (October 4th to 11th) is Ichthyosis Awareness Week. As a parent of a child affected by ichthyosis, I wanted to mark this week by creating something that reflected what my daughter and I like to do together. Ema and I made butterflies using a Cuttlebug die/embossing folder set and then sanded them lightly...using Core'dinations ColorCore Cardstock, of course. I then typed out a few facts about ichthyosis and added them to the body of the bookmark.

Supplies: Core'dinations cardstock, Jillibean Soup patterned paper, journaling sprout and kraft paper, Scenic Route grid paper, ProvoCraft/Cuttlebug butterfly diecut and embossing folder, Stampin' Up heart punch, EK Success marker, Making Memories sanding block, Font: Teletype, other: foam layering tape.

Here's a few of the facts and figures from the bookmark because I know it's hard to read them from the photo:

- "Ichthyosis" is taken from the Greek root for "fish".
- Ichthyosis affects more than one million Americans.
- The ichthyoses are a family of genetic skin disorders characterized by dry, thickened, scaling skin.
- Dermatologists estimate that there are at least twenty-eight varieties of ichthyosis, with a wide range of severity and associated symptoms.
- Ichthyosis is the result of a genetic mutation passed from parent to child.
- In some rare cases, the genetic mutation occurs spontaneously in the affected generation.
- There is no cure for ichthyosis, only treatments to help manage symptoms.
- Ichthyosis is currently classified on the basis of clinical appearance and inheritance pattern. This system, which relies on a few sophisticated tools and tests, has worked remarkably well for diagnosing and classifying most patients with ichthyosis.
- Ichthyosis can be a disfiguring disorder and as such has numerous social and psychological implications.

For more information about ichthyosis, please visit: Foundation for Ichthyosis and Related Skin Types.

Please feel free to use this idea to create bookmarks of your own. A bookmark to raise awareness for Breast Cancer could use a pink ribbon in place of the butterfly. You could replace the butterfly with a puzzle piece if you wanted to raise awareness for Autism.


  1. great post. My daughter has EHK (or BCIE) and I'm always on the lookout for ways to meet other parents of ichthyosis kids, and people with ichthyosis themselves. Great idea with the bookmark. I've been wanting to make a postcard size hand out for people who ask me "what's wrong with her feet, (or insert any visible body part)"

  2. My name is Mihaela Varzan, I am 31 years old and I live in Romania.I suffer from a rather rare desease, that I was born with.I’m talking about ERITRODERMIC IHTIOSIFORM HIPERKERATOSE, also known as CONGENITAL IHTIOSIS.The skin is descuamating, peeling and forming large thick crusts and sometimes even bleeding, all over my body, including the head.I was born whit Ihtiosis and that form my early years, there was only one viable treatment that worked in my case, and that only about 50-60%. This treatment is composed out of NEOTIGASON (2 tablets per day) and a special unguent (minimum 4Kg’s per month) containing vitamins A and E, lanolin, glycerine and some oils, prepared in a pharmacy. Lately I discovered that theEucerin products “Bath & Shower Oil 20%urea, Shampoo 5% urea,Repair Lotion 10% Ureea, Repair Ointment 10% urea, Repair Hand Crème 5% urea, Q10 Active, White Solution Body, and generaly, any skin product that contains 5%, or even better 10% urea is good for my skin. I know this because, a few months ago, a family that found out about my case and wanted to help me, sent me the shampoo, body lotion and the hand crème from Eucerin that I have mentioned earlyer and in under two weeks from the moment I started to use them I could see some rather large improvements in the state of my skin. In fact, even the simptoms of my desease still exist, the fact that these products manage to keep my skin hydrated helped a lot. Unfortunately all these products, here in Romania are extremely expensive and it’s close to imposible for me to buy them. In fact, the minimal cost of my treatment goes around 300 euros per month.
    I have made numerous request to the Galati county Health Insurance House , to the Romanian Health Ministery, I have sent countless requests to politiciens, foundations and other organisations, only hoping to get some help, to receive free or at least a compensated price for my treatment. But, for what it’s worth, I never got a solution, just polite refusals.Now, I am married, but I stay at home and I take care of our little boy Adrian Marian , a perfectly healthy 4 years old , who now goes to kindergarten. He’s our little wonder and for him I decided to keep fighting for my rights. You know, it’s embarasing to say but we don’t even have all the furniture to put in our son’s room. We live from my husband’s pay check – about 200 euros per month.
    Why am I writing to you? Because I came to the end of Institutions list, here in Romania, that could of offered me a solution or even long term support. No one does anything for free here unless he has something to gain from his effort. More than this, most of the foundations here in Romania have runned out of funds and are hardly going from one day to the other.
    I’d like to tell you that I got to a point where I really don’t know where to go, what to do and with whom to talk. I have some rights given by the law but here in Romania, this doesn’t mean too much. So, I am forced to ask people to help me so as to receive my treatment. Beacause i need help. You`re help.
    I wish you all the best.
    Contact e-mail: mihaela.varzan@yahoo.com

  3. Thanks for this useful post.
    Here is some additional information about the “genetics” of this condition that was written by our Genetic Counselor and other genetic professionals: http://www.accessdna.com/condition/Ichtythosis/201
    Thanks, AccessDNA

  4. Hi there
    I have ichthyosis. I write about some of the challenges and triumphs on my blog.
    I wish you and your daughter all the best
    Carly, Australia