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.
Regarding zyrtec, you should definitely give it a try. Neither claratin or allegra worked for me either, but I've been taking zyrtec (now I just take the generic) for years now and it really made a difference for me. I used to have a runny nose EVERY SINGLE DAY. :-)
ReplyDeleteThat said, it doesn't seem to do a thing for my skin problems.
Ah you see, there's the rub--I am lucky enough not to get hay fever. So I "only" get the skin problems. But who knows, maybe Zyrtec will work for me!
ReplyDeleteCheers,
SK