2012 has been a good year for us. Jennifer and I consider this blog and the friends we’ve made and people we’ve educated through it to be one of our best accomplishments for 2012. For many years we had been talking about starting a blog about ichthyosis, and the fall of 2012 was when we finally crossed over from “talking about it” to “doing it”. And over the past few months, I think we’ve started thinking about this blog like our fifth child — it needs regular attention, is often annoying, but also comes with often-intangible rewards.
Here are what we consider to be our best and most important posts in 2012:
Given its preeminence in the popular consciousness, we have prioritized writing about and sharing the stories of families affected with harlequin ichthyosis, the most severe form of autosomal recessive congenital ichthyosis (ARCI). And for many reasons, our series of guest posts from moms caring for children with harlequin ichthyosis has been the most-viewed on our blog in 2012.
Part 1: Life with harlequin ichthyosis: The basic science behind harlequin ichthyosis
Part 2: Life with harlequin ichthyosis: Newborn Surprise
Part 3: Life with harlequin ichthoysis: In the NICU
Part 4: Life with harlequin ichthoysis: Going Home
Part 5: Life with harlequin ichthoysis: Ups and Downs in the First Year
Part 6: Life with harlequin ichthoysis: Toddler years
Part 7: Life with harlequin ichthoysis: Starting Elementary School
We are so grateful that Alicia, Courtney, De De and Shannon have shared their stories on our blog. And our series will continue in January 2013 with guest posts from some young adults affected with harlequin ichthyosis.
Of our own writing, hands-down, we think our most important post for educating people about ichthyosis has been our post about the 2009 Sorèze conference and their consensus on revisions to how researchers have standardized the names for various types of ichthyosis. As best as we can tell, we were the first people to write about this outside of a scientific journal.
We also know that our post publicizing Beiersdorf’s free Aquaphor program for those affected by ichthyosis has made an impact on several families’ lives. And on a similar note, we are also happy that our blog has been able to recruit people to participate in Dr. Choate’s ichthyosis gene discovery study at Yale.
In October, we started writing about ichthyosis research projects funded by or publicized by FIRST. Our hope was to write a simpler explanation for lay readers. We started by writing about Dr. Paller’s gold nanoparticle siRNA “nanotech ointment” project, and also posted about Dr. Traupe’s better mouse for ichthyosis research, Dr. Roop’s stem-cell research and additional research tidbits from the December 2012 FIRST newsletter.
Jennifer has written introductory posts about basic skin science, genetics and recessive inheritance. And she started the first of a series of posts about ichthyosis in history. We also learned a lot about (and wrote about) the high incidence of severe ichthyosis in a tiny village in Mexico, and speculated about whether the founder effect was the culprit. (Given the subject, we attracted lots of attention from Spanish speakers, so we translated that article into Spanish.)
For various reasons, we’ve been slow to tell our own family’s story here, and we hope that will change in 2013. We thought we did a pretty good job with our introduction posts (Rachel | Jennifer), but additionally, Rachel has written good posts about her own daily cream routine and morning shower routine (and hot water tank issues), her lack of mobility, use of Glad Cling Wrap and doing yardwork in autumn. And Jennifer has also written a lot about school. She’s written about how we explain the boys’ ichthyosis to their new teachers, issues we had with setting up our 504 plan (including trouble this fall), and falls on Cookie’s first day of school and later.
And finally (and somewhat sadly), we have used our blog as a bully pulpit in response to inaccurate coverage of ichthyosis in the mainstream media, in addition to on another blog. Rachel’s comment on Metafilter (and link to our blog here) made the “Best of Metafilter” list, and traffic from our comments on ichthyosis threads on Reddit also drove a lot of traffic here. And finally, we have spent a lot of time over the past few days trying to educate people in the wake of a scam on Facebook to take advantage of a baby with harlequin ichthyosis.
Thank you for visiting us and listening to what we have to say. Over the past four months, we have found blogging to be a very rewarding experience, and we look forward to what 2013 and the future will bring for us.