The questions on our Reddit AMA today have pretty much stopped, which has given me some time to pull together some thoughts. First — a huge THANK YOU to Kyriaki. It was awesome doing this with you!
My own pictures of my skin (foot, neck, hand, knee) have been viewed over 150,000 times today. And our family photo (which we posted in the afternoon) has been viewed over 56,000 times. Kyriaki’s photos have been viewed even more times.
I’ve written about the power of social media connections before, but it’s never been this personal for me. Realizing that 150,000 people have seen an up-close picture of my (usually well-covered) body parts is both terrifying and awe-inspiring. It is hard to wrap my mind around the fact that we’ve connected with so many people, and that the words I hastily dashed off at 6:30 in the morning had that much of a reach. Fifteen minutes of fame, anyone?
As far as the family photo goes, we have jealously guarded our privacy up until now, but I realized that my random body parts without context didn’t tell our family’s entire story. And that while I have been reluctant to thrust our kids into the limelight, I also realized that leaving them out of the picture made our narrative (and message) incomplete.
The 1,000 comments weren’t just chit-chat about horse-sized ducks or our favorite movies. We engaged some people (including trolls) on a superficial level, but I know we touched others more deeply. And we connected with some people who had ichthyosis or knew someone with ichthyosis, but had never actually talked about it before. I was fascinated by the bandwagon effect — how many people chimed in that they knew someone with ichthyosis or something very similar to it. And that makes sense; while rare, when you expand things to X-linked ichthyosis and ichthyosis vulgaris, that’s really a lot of people.
Searches for “ichthyosis” on Reddit now have, as the first result, our AMA post. I think that’s significant.
There are some individual responses and issues in the AMA which I want to address in future blog posts, but if you look through the things people wanted to know about, you can see some clear themes. Among the things we expected — discussion of our family situation, genetic issues, lotion advice, retinoids, bullying — there were also many comments about harlequin ichthyosis. The implications of the proliferation of harlequin ichthyosis as an “Internet meme” cannot be understated, in my opinion.
Also significant, I think, are the (currently unanswerable) questions about the broad relationship of ichthyosis to other health conditions. There are no longitudinal studies out there tracking outcomes. We have a lot of anecdotal information but no numbers. And the more I think about it, I believe that this problem can be addressed with resources and tools we have at our disposal today.
One last note. I haven’t written about my being transgender on the blog here because I didn’t want that fact to distract from the advocacy we were trying to accomplish. What I came to realize over the past few months, though, was that it was impossible for me to write with an honest voice without disclosing that fact. You’ll see within the discussion on Reddit that Jennifer and I faced those questions head-on, and I am both relieved and gladdened by the overall response from the Reddit community.
Last year’s FIRST conference in Denver was the first large group I had “come out” to (outside of LGBT circles). For the most part, it was a very positive experience, and being welcomed by the extended “ichthyosis family” in that context was a huge deal for me. And I feel that it’s important for me to publicly express my profound appreciation for all of that; I’m just sorry I didn’t have an occasion to do it sooner.
