First global eczema Twitterparty a success

Yesterday I took part in what must have been the first-ever "Twitterparty" for eczema, initiated by Jennifer at Itchy Little World (on Twitter as @EczemaCompany) and moderated by Mei at Eczema Blues (on Twitter as @MarcieMom). It was a genuine pleasure to interact with so many concerned and involved people, even more so as this was a truly global event--Mei's in Singapore, where it must have been early morning, and Jennifer's in the UK, where it was 2 am. Here in California it was 6 pm. Pretty sweet for me, hey?

The hashtag was #4eczema. Mei's posted an extract of the proceedings on her blog. I was slightly delayed in joining because of my commute so you will see me joining halfway through (I'm @endeczema).

In short, it was what you'd expect from a hundred or so people dancing around a complex topic on Twitter. Everyone's got their own agenda (seemed like the majority of tweeps were parents dealing with their children's eczema) and, since eczema is such a complex disease and has so many manifestations and triggers, and everyone's experience is unique, you see a cornucopia of problems and partial solutions. Fortunately Mei did the best she could as a moderator--the session was organized, if you can say that, around a series of eight or so questions that she posed to the crowd. The tweets were loosely correlated with the questions.

Also Mei had arranged for four "experts"--who I take to be practicing dermatologists, since I haven't checked them out--to anchor the session and, presumably, keep discussion connected to reality. This definitely added some credibility. I imagine if there were no experts participating, the discussion might have gotten hijacked by alternative therapies.

The thing is, there were so many solutions that people suggested, that just from looking at the transcript you can see that eczema is an unsolved problem. (Or bag of unsolved problems.) It's clear that the best you can do is find out what your or your kid's triggers are, bathe and moisturize properly, and use pharmaceuticals to keep the flares down. Personally, I was interested to learn that Zyrtec might work against pollen allergies. I haven't tried it yet. It's an antihistamine, and I have found the antihistamines Claritin and Allegra do nothing for me, so I don't hold out hope--but I'm willing to try it the next time I have a flareup.

All in all it was definitely a success. (I liked the prize giveaways too--even if I'm not going to win anything, or don't necessarily want to, it makes me feel competitive and heightens my attention.) My impression is that there will be another Twitterparty in the future, perhaps arranged for a time more convenient for Europe or Asia. I look forward to it. This was a great opportunity to connect with concerned patients, parents, and doctors around the globe.

If only Justin Bieber had eczema

If you want a blog to succeed, it's not enough just to write it--this has to be obvious to anyone who's tried. It's not enough to find a compelling topic and write thoughtful essays or even pop-eyed political rants. You have to connect to your audience and sell your blog.

I find self-promotion is about as fun as standing up in front of the class in sixth grade to give a presentation on newts. Fortunately, technology has made it slightly easier for people like me. There's Twitter, my main marketing tool until Google and Technorati finally register my existence. I tweet every post to this blog. And on Twitter, you get followers in a sort of pull-yourself-up-by-the-bootstraps method: you follow other people and hope they follow you back. To find people who might be interested in this stuff, I search for Twitterers whose posts include the word "eczema."

About 80% of these posts are from news outlets still regurgitating the cats-vs-dogs story of a couple weeks ago, or from sites claiming to have the miracle cure that will banish your eczema forever if only you dose yourself with primrose oil or cod livers or some homeopathic bullshit. There are people out there, though, who are bold enough to announce their current eczematous state to their 1,200 friends. (I should be so lucky to have 1,200 friends.) Most of these people are evidently aged 16-20, based on their tweetline: "Lord what my teacher talking about now"; "I am living in the library. Again :o/"; "Math homework can go away forever" and updates about the haircut of some guy named Justin Bieber.

And at least half of them are African-American. Possibly not the ones tweeting about Justin Bieber. This was a surprise to me. I'm Caucasian, of Swiss-German descent, and naturally, thinking it's all about me, I assumed that Swiss Germans had some monopoly on eczema. I've never seen an African-American with eczema. But then-- I rarely see anyone with eczema. Is this because we all cover up or stay home when we have flare-ups?

There's an interesting academic study recently out that describes eczema prevalence in children across the United States. (Haven't found good data on adults yet.) To quote the abstract: "Black race...significantly associated with a higher prevalence of eczema." Many other factors, too, of course. Even more interesting: prevalence was virtually identical for subjects of black or "multiple" race. Fascinating-- I had assumed that the history of eczema in my family was due to us coming from a region where people of similar heritage have been interbreeding for hundreds of years and keeping recessive genes in the population. I figured that what we needed to eradicate the disease was a few generations of vigorous outbreeding (OK, perhaps time to stop talking like a rancher). But, apparently, that wouldn't necessarily solve the problem.