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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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Welcome to our blog about ichthyosis

Welcome to our blog. We intend to write about the rare skin disorder ichthyosis and its effect on our lives.

Your lead bloggers are Jennifer and Rachel See. Rachel is a lawyer and grew up in a family full of doctors and nurses. Jennifer taught anatomy and physiology to nursing students at a community college, and has also drawn hazardous-duty pay teaching high school earth science and biology in an inner-city school. Both of us have experience explaining technical, scientific issues in everyday language, and we hope our blog will be able to collect and synthesize some of what’s out there.

We live in Virginia with our four children. Rachel and our three boys are all affected with a very rare form of ichthyosis called ichthyosis-en-confetti. As parents of affected children, caring for ichthyosis is very much on our minds every day, and we hope that through our blog we will be able to share our trials and experiences with dealing with ichthyosis in the many ways it affects our lives.

We have thought about blogging for a long time. We believe that hiding behind pseudonyms would make us less accountable for what we say but at the same time we are mindful that a frank and open discussion requires us to share personal details about ourselves and our children. Our particular form of ichthyosis is rare enough that many of our readers already know exactly who we are. On the other hand, we do not want to place our children in a more public light than necessary. Our compromise is that we are not naming our children. Our children will be referred to as Cookie (10), Kitty (8), Monkey (7) and Momo (4).

Our blog is not medical advice. While we will strive to present as many scientific nuances as possible, please understand that we are not medical professionals and cannot provide medical advice to anyone. Likewise, our background is in traditional Western medicine backed by the scientific method. We have strong opinions regarding the efficacy of some treatments. You may not agree with those opinions, but it’s our blog. :)

Our blog is also not legal advice. Rachel is not your lawyer and cannot provide legal advice to you. Nothing posted on our blog or in our comments is intended to create any sort of attorney-client relationship.

What we write on our blog are our own informed opinions, and are not necessarily the opinions of our current or former employers or any other organizations we’re affiliated with or volunteer for. Rachel works for the federal government, and the opinions she expresses on the blog are not those of the government.

In 2009, Rachel became a member of the Board of Directors of FIRST, the Foundation for Ichthyosis and Related Skin Types, and is currently the chairperson of the Board’s Technology and Marketing Committee. Rachel does not receive any compensation for her work for FIRST.

In 2010, Jennifer received FIRST’s “Volunteer of the Year” award. She also serves as a Senior Ambassador in FIRST’s Regional Support Network. Jennifer does not receive any compensation for her work for FIRST, either. Jennifer is also a volunteer moderator on the forum at ichthyosis.com.

Our blog is not approved by FIRST staff or anyone on its Medical and Scientific Advisory Board, and the opinions on our blog are not necessarily those of FIRST, the FIRST staff, the MSAB, or the FIRST Board. That said, we enthusiastically support FIRST and its mission to educate, inspire and connect those touched by ichthyosis and related disorders, and, just like we have coordinated posts with other bloggers in the “ichthyosis family”, we may coordinate our efforts with FIRST.

We welcome comments and intend to participate in the comment threads. However, we reserve the right to edit all comments, and moderate all comment threads, as we see fit. This is especially true if we feel that comments contain misinformation, phobic content (based on race, sex, sexual orientation, gender, nationality, religion, etc), or is a personal attack or threat. Please play nicely in our sandbox!

Affectionately,
Jennifer and Rachel

UPDATE April 2013: De-anonymized and updated our kids’ ages. Added additional disclaimers.

7 comments to Welcome to our blog about ichthyosis

  • rachel

    Hello, world!

  • Leandra

    With the wealth of information and experience you have between the two of you, I am grateful that you have chosen to share. Despite the overflowing plates you already have, I am inspired by
    all you do to help others as well. Thank you!

  • Kitty

    “Explaining technical, scientific issues in everyday language” gives me a flash back to our meeting last year in Richmond when we talked about S-I-L & grand daughters’ EKV. J, you put it in such easy to understand translation. I look forward to future posts. Is there a “follow this blog via email” option?

  • rachel

    Hi, Kitty. Thanks for visiting and for your comments. The blog’s RSS feed is at http://confettiskin.com/wp/feed/ — and I see that the links to the RSS feeds seem to have vanished in our last round of template revisions. I’ll see if I can put them back in tonight.

  • Tonya

    Thanks so much for your blog! I find it very helpful, and it’s comforting to know there are others coping with the same condition in the area. Both my mom and I have CIE, but she has more “confetti” (we call them white spots) then I do. Living in the Washington, DC area, I was fortunate to be seen at NIH since birth until I was 18. When I was a teenager, I would attend the FIRST conferences, and it was helpful to know there were others around the world with same condition. Now in my 30s, I still see the same dermatolgist a few times a year even though he no longer practices at NIH. I look foward to reading more in your blog!

  • Pauline

    Leandra, I couldn’t have put it better myself. I was thinking the same things just now. Rachel and Jennifer are soooo knowledgeable but more importantly so professional and unbiased in their attitude.

    This is well overdue, to have two people with such professional approaches. It is a breath of fresh air, and it helps each and every one of us, understand everyone’s type of ichthyosis not just our own.

    Love Pauline

  • Linda Efird, RN, BSN, MSN, MA

    I am a Health Science Technology instructor for Jeffco Public Schools. My students are working on a Community Awareness project focused on Ichthyosis. All of my students are interested in pursuing careers in health care and as part of their project they are learning about Ichthyosis. I was given your information from FIRST and would love to see if I can schedule a speaker to come into our classroom to educate our students about your organization.

    Thanks for your time.

    Linda Efird
    303-982-8642

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