My friends Jennifer and Rachel See run a blog called Confetti Skin. They're extremely knowledgeable about Ichthyosis, and continually challenge misinformation that's spread about the condition. They recently took to Reddit to engage with the gawkers. The support they gained was incredible - and as we agreed, unexpected.
"Hello! We are Jennifer and Rachel See, the authors of the Confetti Skin, Beauty Within blog. We have been blogging about ichthyosis and its effect on our lives and more information about us and our affected children is available on our blog. (For those of you who are unfamiliar with us, our “blog year in review” post from January summarized the highlights of our blog, and might be a good supplemental introduction to our writing.) For our guest post, Carly asked us to talk about our blog and our widely seen “Ask Me Anything” post about ichthyosis on Reddit.
We have been extremely active within the the “ichthyosis community” -- both as volunteers in various capacities for FIRST, the Foundation for Ichthyosis and Related Skin Types, and in numerous online discussion groups. In addition to explaining the science behind ichthyosis research and sharing personal stories about life with ichthyosis, we have also written about ichthyosis in the mainstream media and how it’s perceived in the broader world.
Like it or not, the skin disorder that affects our children has, for many years, been notorious as an “Internet meme”. We believe that many young people only know about ichthyosis because they have seen viral “shock” pictures or videos of babies with harlequin ichthyosis, the most severe form of autosomal recessive congenital ichthyosis (ARCI).
A few months ago, Rachel tallied up the hits for the top 12 videos on Youtube showing babies with harlequin ichthyosis, and by her count they were viewed over 65 million times and had attracted over 80,000 comments. And in 2010, in another Youtube video viewed millions of times, a well-known Hollywood director’s “reimagining” of a video-game villain as affected with harlequin ichthyosis.
This past December, a Facebook marketing scammer impersonating a Brazilian soccer player stole a picture of a baby with harlequin ichthyosis, and put it up on their Facebook page with the caption “1 like = 1 get well soon”. The picture generated over 1.3 million “likes” on Facebook. We wrote about how “liking” the picture did nothing to help people with ichthyosis and how Rachel explained what was going on to our oldest child.
Just as that brouhaha was settling down, a picture of a person with lamellar ichthyosis attracted a lot of attention on Reddit, one of the most popular and influential sites on the Internet. (Last month, Reddit had over 63 million unique visitors who viewed over 4.4 billion pages; here’s someone’s infographic explanation of how Reddit works.)
In any event, like many other pictures of babies and other people with ichthyosis, the picture was posted to the “WTF” subforum of Reddit, which has over 3 million readers. Earlier in December, we had participated in similar discussions about ichthyosis on the WTF subreddit, and as we started reading the lamellar ichthyosis post, we were preparing for much of the same.
Our hope was that by engaging with the gawkers on Reddit, we would be able to help stop the spread of misinformation and ignorance. But this time, we saw that someone else had already beaten us to it. A young woman who went by the Reddit username “Candlesandfish” had posted that she had lamellar ichthyosis, that it didn’t look like the the untreated body part in the original post, and then even posted pictures of herself to prove it. She singlehandedly had derailed most of the gawking by the time we woke up and found it that morning.
After we “met” in the WTF thread, we got to know Kyriaki, the young woman behind “Candlesandfish” much better. (She even wrote a very Aussie-specificT guest post for our blog.) And together, we decided to try to reach an audience beyond Reddit’s “WTF” forum by opening ourselves up to questions in Reddit’s “Ask Me Anything” area.
The “AMA” area is one of Reddit’s most popular forums, with celebrities and non-celebrities alike stepping up to face whatever questions the Reddit community throws out. Redditors like honesty and don’t like to be sold a product. President Obama had a very successful session during his campaign, and the MythBusters have had three separate sessions to the delight of thousands. Movie stars coming on to promote a movie or proving themselves barely literate have gone really badly when the crowd wants to ask about other things.
We felt our own AMA from April 15 was wildly successful. The post itself generated over 1600 comments, of which at least 300 were questions. But the really amazing thing was how many people apparently saw what we had to say but didn’t post. Because of the “upvotes” on the post, we made the front page of Reddit, and the “proof” picture we posted of Rachel’s foot has been viewed over 270,000 times and our own family photo has been viewed over 71,000 times.
We feel that the most important thing we accomplished in the Reddit “AMA” was combating misinformation and putting a human face on a disorder that many people only knew as a “shock” picture. Helping people understand that harlequin ichthyosis isn’t always fatal and that there are many types of ichthyosis leads to better understanding all-around, we think.
Some of the questions we faced were fairly awkward to address. Many people wanted to know why we had children, and asserted that we were being selfish by choosing to have children who might be affected with ichthyosis. One person called us “monsters” to pass this on, while others were gentler. Doing a successful “Ask Me Anything” doesn’t mean that you need to discuss every detail of your life, but we felt that these were legitimate questions that do come up in serious discussions with affected individuals and parents. And we think that having that discussion, with appropriate context and perspective, is a good thing. (Just because a question is difficult or doesn’t have clear-cut answers doesn’t mean that it should be shunned.)
We also had over a dozen people came out of the woodwork to say, “Hey, my nephew has this, too! I’m going to show him this thread!” Our openness meant we made several new friends. Some said that they had never spoken with anyone else who was affected with ichthyosis, or that they would direct a teenage family member towards our writings as a positive role model. We think we demonstrated to hundreds of thousands of people on Reddit that having ichthyosis does not doom you to having no family, children, friends or career, which is not only a common fear among new parents, but also a common assumption made by people who only see a shocking picture of a baby affected with harlequin ichthyosis.
Most people were just curious, and asked a lot of insightful questions. Hearing what they were curious about -- genetic issues, lotion advice, retinoids, bullying -- provided lots of food for thought (and future blog posts and advocacy projects). It was really nice to see some posts where they saw the positive side of ichthyosis - fast-healing skin, for example.
We were overwhelmed by how positive the whole experience was. Ignorance and fear are best combated by education. We think we made a pretty good dent and look forward to the next big thing."
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