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.
Saturday, March 17, 2012
Monday, March 12, 2012
Quit it with the puns in media stories about eczema
Have you noticed that newspaper editors tend to choose what they think are funny titles for stories about eczema?
The latest that I've seen: "The itchy and scratchy show," courtesy of the Ottawa Citizen.
This annoys me.
Why? Because eczema is no joke to me.
Writers almost always use humor to show disrespect. That's why humor is the weapon of rebels in repressive regimes like the USSR & why those regimes ban books like "The Master and Margarita." But when you're not a rebel, you're a bully. And the victim of the humor has the right to decide the difference.
So some editor at the Ottawa Citizen is dissing me. Us. Is this deliberate?
Nah, he or she is just lazy. The story that follows the title, after all, is serious. But editors need to choose titles that are short, relevant, and grab the attention. That's why they resort to cliches. Lord knows, in my writing and editing career, I have been guilty of doing the same thing.
Cliches call up a whole host of tired, familiar associations, George Orwell said, "like cavalry horses answering the bugle." The itchy and scratchy show. The Simpsons. People with eczema are always scratching! Isn't it funny. Well, not really, but from the editor's perspective, their job is done.
Disrespect, though, means people less likely to take eczema seriously as a medical condition. It's been shown to reduce quality of life as much as diabetes. Would you laugh at someone with diabetes? Would you write "Victory in the bag for colostomy patients"? "Amputees stumped by latest setback"? Maybe, if you work for a British tabloid, but we know how much integrity those people have.
I've decided this is an us-and-them issue. Where is it OK to joke about eczema? Within the patient community, where we have to live with the condition. The National Eczema Association uses a bunch of cringe-worthy puns as titles for their stories and features. And thanks to the Citizen, I myself was inspired to use "the itchy and scratchy show" as an idea for a kid's onesie in a contest Jennifer is having on her blog It's an Itchy Little World. We own eczema, so we've earned the right to choose how we talk about it.
But the media? Odds are, you don't know what it's like to live with eczema. So write serious titles. It works for the New York Times.
The latest that I've seen: "The itchy and scratchy show," courtesy of the Ottawa Citizen.
This annoys me.
Why? Because eczema is no joke to me.
Writers almost always use humor to show disrespect. That's why humor is the weapon of rebels in repressive regimes like the USSR & why those regimes ban books like "The Master and Margarita." But when you're not a rebel, you're a bully. And the victim of the humor has the right to decide the difference.
So some editor at the Ottawa Citizen is dissing me. Us. Is this deliberate?
Nah, he or she is just lazy. The story that follows the title, after all, is serious. But editors need to choose titles that are short, relevant, and grab the attention. That's why they resort to cliches. Lord knows, in my writing and editing career, I have been guilty of doing the same thing.
Cliches call up a whole host of tired, familiar associations, George Orwell said, "like cavalry horses answering the bugle." The itchy and scratchy show. The Simpsons. People with eczema are always scratching! Isn't it funny. Well, not really, but from the editor's perspective, their job is done.
Disrespect, though, means people less likely to take eczema seriously as a medical condition. It's been shown to reduce quality of life as much as diabetes. Would you laugh at someone with diabetes? Would you write "Victory in the bag for colostomy patients"? "Amputees stumped by latest setback"? Maybe, if you work for a British tabloid, but we know how much integrity those people have.
I've decided this is an us-and-them issue. Where is it OK to joke about eczema? Within the patient community, where we have to live with the condition. The National Eczema Association uses a bunch of cringe-worthy puns as titles for their stories and features. And thanks to the Citizen, I myself was inspired to use "the itchy and scratchy show" as an idea for a kid's onesie in a contest Jennifer is having on her blog It's an Itchy Little World. We own eczema, so we've earned the right to choose how we talk about it.
But the media? Odds are, you don't know what it's like to live with eczema. So write serious titles. It works for the New York Times.
Thursday, March 8, 2012
Staph aureus opens the door to skin infection by other viruses
If you have eczema, I'm sure you never thought it was a good thing that your skin was colonized by Staphylococcus aureus, the cause of so many runaway infections. If that weren't bad enough, scientists have now shown that S. aureus produces a toxin that enables other viruses to more easily infect skin cells.
The work, done by a group led by Donald Leung at National Jewish Health Center in Denver, was presented this week at the annual meeting of the American Academy of Allergy, Asthma, and Immunology in Orlando, Florida.
S. aureus produces a number of toxic substances, but one stands out in particular: "alpha-toxin." The researchers pretreated normal human skin cells with a variety of toxins, and then incubated the cells with two viruses: vaccinia and herpes simplex. Only alpha-toxin increased the amount of virus infecting the cells, compared to a control experiment. Alpha-toxin increased viral load of herpes in the skin cells by threefold, and that of vaccinia tenfold.
This may explain, the authors say, why patients with eczema are much more susceptible in general to viral skin infections than "normal" people. Eczema patients, for whatever reason, host a semi-permanent population of S. aureus, which is pumping out alpha-toxin and opening the door for its viral relatives.
[added later] It's well-known that people with eczema are more likely to develop warts, which are caused by viruses. Maybe if there were a way to neutralize S. aureus alpha-toxin, we could cut down on the number of times we get viral skin outbreaks and warts too.
The work, done by a group led by Donald Leung at National Jewish Health Center in Denver, was presented this week at the annual meeting of the American Academy of Allergy, Asthma, and Immunology in Orlando, Florida.
S. aureus produces a number of toxic substances, but one stands out in particular: "alpha-toxin." The researchers pretreated normal human skin cells with a variety of toxins, and then incubated the cells with two viruses: vaccinia and herpes simplex. Only alpha-toxin increased the amount of virus infecting the cells, compared to a control experiment. Alpha-toxin increased viral load of herpes in the skin cells by threefold, and that of vaccinia tenfold.
This may explain, the authors say, why patients with eczema are much more susceptible in general to viral skin infections than "normal" people. Eczema patients, for whatever reason, host a semi-permanent population of S. aureus, which is pumping out alpha-toxin and opening the door for its viral relatives.
[added later] It's well-known that people with eczema are more likely to develop warts, which are caused by viruses. Maybe if there were a way to neutralize S. aureus alpha-toxin, we could cut down on the number of times we get viral skin outbreaks and warts too.
Wednesday, March 7, 2012
My daughter is not a smaller version of me. She has asthma
One of the subtle but surprising things I’ve learned as a father is that our children are not little copies of us. Their personality differences shine through from the beginning but become more apparent as they grow up. My son looks like me; he likes dinosaurs and Kraft noodles, as I did; he refuses to learn anything from a teacher, as I did; but he doesn’t “get” Lego, he has no interest in music; he’s got his own opinions, likes, dislikes, and outlook on the world.
Also, he doesn’t have eczema, thank god.
My daughter does, but not as severely as I did. I can see myself in the way she deals with the itch and indignity. My own experience with eczema meant that I knew what it was from the get-go, and I knew what to do to treat it, in the limited way that medicine permits. When my wife doesn’t know what an inflamed patch of skin is, or whether something is infected badly enough that we have to worry about it, I have an answer.
This makes me feel that I am a little bit in control. But here’s the danger: my daughter is developing asthma, which I know nothing about. She hasn’t had a serious attack yet, but when she gets a cold, she wheezes and breathes quickly and shallowly, and the doctors have had us put her on an inhaler—with Albuterol, a bronchodilator, plus a vaporized steroid for more severe incidences.
Because I don’t have asthma (and possibly because I am a dad), I worry less than I should about my daughter’s breathing difficulties. I don’t know what it means. I just assume she’s a small version of me and she’s got a stuffy nose. But she’s not. She’s got a well-defined medical condition that I need to take seriously.
My own father thought of my eczema as something trivial, something I needed to grow up and leave behind. (If only that were possible!) When I was 20, he told me to stop scratching—that adults were able to control themselves. He should have known better, because his own father had had eczema, but he didn’t. He assumed that I was just a younger version of himself who could benefit from some advice.
My daughter is not a smaller, younger me. So I’d better get informed about asthma: how it develops, what causes an attack, what to have on hand. It could be a matter of life or death.
Also, he doesn’t have eczema, thank god.
My daughter does, but not as severely as I did. I can see myself in the way she deals with the itch and indignity. My own experience with eczema meant that I knew what it was from the get-go, and I knew what to do to treat it, in the limited way that medicine permits. When my wife doesn’t know what an inflamed patch of skin is, or whether something is infected badly enough that we have to worry about it, I have an answer.
This makes me feel that I am a little bit in control. But here’s the danger: my daughter is developing asthma, which I know nothing about. She hasn’t had a serious attack yet, but when she gets a cold, she wheezes and breathes quickly and shallowly, and the doctors have had us put her on an inhaler—with Albuterol, a bronchodilator, plus a vaporized steroid for more severe incidences.
Because I don’t have asthma (and possibly because I am a dad), I worry less than I should about my daughter’s breathing difficulties. I don’t know what it means. I just assume she’s a small version of me and she’s got a stuffy nose. But she’s not. She’s got a well-defined medical condition that I need to take seriously.
My own father thought of my eczema as something trivial, something I needed to grow up and leave behind. (If only that were possible!) When I was 20, he told me to stop scratching—that adults were able to control themselves. He should have known better, because his own father had had eczema, but he didn’t. He assumed that I was just a younger version of himself who could benefit from some advice.
My daughter is not a smaller, younger me. So I’d better get informed about asthma: how it develops, what causes an attack, what to have on hand. It could be a matter of life or death.
Friday, March 2, 2012
Why I blog about eczema anonymously
The ability for internet users to be anonymous has made possible a virtual world where courtesy and tact are notably absent. Trolls and flame wars abound; insults and knee-jerk reactions are the norm. To be online as your true identity immediately makes you kinder and more civil. It also makes you more credible.
So why do I write this blog anonymously?
I've been thinking about this and the answer is that I am not ready for eczema to be a part of the public me. Ha, you may say, it already is; it's written on the backs of your hands, the insides of your elbows, the backs of your knees in the eternal cycle of inflammation, sores, scabs, and scratch marks. It's there on your face for all to see in the red, itchy patches you get because of a pollen allergy.
But to see my eczema for yourself, you have to see me in person. And I don't make it easy--I wear long-sleeved shirts and trousers and rarely visit the pool or beach.
These days, however, your personality and public appearance do not consist merely of what you act like and look like on any given day. They're augmented and almost supplanted by your online persona in emails, websites, Twitter, LinkedIn, and Facebook. And you relinquish control to anything you put online. It's immediately recorded and archived and made searchable to everyone for eternity.
Searchable.
Any of my Facebook "friends," any business contact, any future employer, any government agency potentially has the ability to see my entire online personality. (Oh, sure, you think you've put some restrictions on those images and updates, but a sudden glitch can make the private public, as I found out the other day when I Googled myself and saw a photo of my son at one year old--a photo that was supposedly part of a private Picasa archive.)
If you have any degree of internet savvy, you know that you're always curating your own personal brand in anything you put online. You're choosing what to present. And eczema is an unsightly, embarrassing affliction that I choose not to include in my true personal brand at the moment.
Just think: how many celebrities do you know of who have eczema? How many celebrity spokespeople are there? I know of only one: Sasha Vujacic of the LA Lakers. He's adopted eczema as a cause because of a connection with Eric Kageyama, whose son Jarrett suffers from severe eczema.
I think it's a lot easier for parents of children with eczema to go public than it is for adults who have the condition. You're not embarrassed about putting yourself out there for your child. You have little to lose. The adult with eczema, however, has something to lose: social standing. It's unfortunate but there it is. In this way, although one is blameless for being afflicted, having eczema is like being an alcoholic or a sex addict--something you're only ready to reveal to fellow sufferers.
So that's why I blog anonymously.
[added later] I think the same phenomenon prevents many of us from connecting via social media. If you've got an established online personality, you probably don't want other people to know that you're finding tweets or blog posts about eczema interesting--so you don't "like" them or otherwise pass them along, unless you create an avatar, a separate anonymous identity, for yourself.
So why do I write this blog anonymously?
I've been thinking about this and the answer is that I am not ready for eczema to be a part of the public me. Ha, you may say, it already is; it's written on the backs of your hands, the insides of your elbows, the backs of your knees in the eternal cycle of inflammation, sores, scabs, and scratch marks. It's there on your face for all to see in the red, itchy patches you get because of a pollen allergy.
But to see my eczema for yourself, you have to see me in person. And I don't make it easy--I wear long-sleeved shirts and trousers and rarely visit the pool or beach.
These days, however, your personality and public appearance do not consist merely of what you act like and look like on any given day. They're augmented and almost supplanted by your online persona in emails, websites, Twitter, LinkedIn, and Facebook. And you relinquish control to anything you put online. It's immediately recorded and archived and made searchable to everyone for eternity.
Searchable.
Any of my Facebook "friends," any business contact, any future employer, any government agency potentially has the ability to see my entire online personality. (Oh, sure, you think you've put some restrictions on those images and updates, but a sudden glitch can make the private public, as I found out the other day when I Googled myself and saw a photo of my son at one year old--a photo that was supposedly part of a private Picasa archive.)
If you have any degree of internet savvy, you know that you're always curating your own personal brand in anything you put online. You're choosing what to present. And eczema is an unsightly, embarrassing affliction that I choose not to include in my true personal brand at the moment.
Just think: how many celebrities do you know of who have eczema? How many celebrity spokespeople are there? I know of only one: Sasha Vujacic of the LA Lakers. He's adopted eczema as a cause because of a connection with Eric Kageyama, whose son Jarrett suffers from severe eczema.
I think it's a lot easier for parents of children with eczema to go public than it is for adults who have the condition. You're not embarrassed about putting yourself out there for your child. You have little to lose. The adult with eczema, however, has something to lose: social standing. It's unfortunate but there it is. In this way, although one is blameless for being afflicted, having eczema is like being an alcoholic or a sex addict--something you're only ready to reveal to fellow sufferers.
So that's why I blog anonymously.
[added later] I think the same phenomenon prevents many of us from connecting via social media. If you've got an established online personality, you probably don't want other people to know that you're finding tweets or blog posts about eczema interesting--so you don't "like" them or otherwise pass them along, unless you create an avatar, a separate anonymous identity, for yourself.
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