The National Eczema Association launches a blog

The National Eczema Association has launched a blog on their website. I was honored to be asked to write the first post. "Well-moisturized infants less likely to develop eczema" is a summary of Eric Simpson and Hywel Williams' ongoing study of how moisturizing newborns provides them with barrier protection that can delay or maybe even prevent eczema from developing.

More posts are in the pipeline from other sources. The NEA expects that the blog will eventually feature the work of many different bloggers, including active scientists and clinicians as well as science writers. I look forward to discovering an ever-expanding community blogging eczema research, therapy, and coping strategies for parents and patients.

Voov and I make a pilgrimage to NEA headquarters

Look for my blog posts to appear regularly, if sparsely, on the website of the US's National Eczema Association starting soon. That was the upshot of a trip I took today with my 3-year-old daughter Voov to meet the NEA's CEO Julie Block at the organization's headquarters in San Rafael, California--which is only a 20-minute drive from where I live. Isn't it convenient!

Voov, Spanish Key (in disguise w/ late-phase Miles Davis wig), and a concerned-looking Julie Block, CEO of the National Eczema Association, at the nonprofit's HQ in San Rafael. Like the logo on the door? It's part of the NEA's recent rebranding effort.

About two years ago, when I was starting this blog, I talked to Julie and NEA communications director Diane Dunn about how we might be able to partner. I work at a dynamic bioscience campus in San Francisco, and I was hoping Julie and Diane might come down for a tour, to see how eczema therapies might be commercialized; but it wasn't happening. And if the mountain won't come to Mohammed, Mohammed must go to the mountain. Opportunity arose this week when I had to stay home on Friday to look after Voov.

Voov inherited my genes for eczema. She gets it on her hands--red, crusty inflammation and cracks that won't heal. But she's good-spirited. During today's summit she entertained herself with Julie's collection of binder clips and colored markers, and afterward sang "Jingle Bells" most of the way home.

Julie and I had a great two-hour conversation about eczema science writing, blogging, social media, and nonprofit fundraising. We agreed that eczema is covered only very shallowly in the mass media, despite 20% of children being affected and 2-3% of adults. There's a need for information about causes and treatment. Likewise, the blogosphere has very few voices covering eczema. On the web in general, overly commercial sites touting treatments of dubious worth tend to dominate. By contrast, the NEA provides a credible forum on its website where patients and parents can go to get scientifically valid information about eczema. Julie is particularly proud of the NEA's Facebook page, which enables them to engage almost in real-time with the community; she's happy, though, that a number of more conservative (not in the political sense) users tamp down the emotion and opinions that eczema can churn up.

Supporting basic and applied eczema research is a priority for the NEA, which offers a limited number of grants at the smaller end of the spectrum (around $100k). Julie points out that winning such grants, from a patient advocacy organization, can make a scientist's application for larger grants much more attractive to the NIH. In my day job, I also see the effect that "smaller" grants can have if given at the crucial precommercial stage where a scientist is doing experiments to validate research before spinning off a company. It's with the broad goal of raising donations for the NEA to fund research that I'm going to be writing blog posts for the NEA website (probably every month or two). As I do on this blog, I'll be covering recent advances in the field, showing that the field is active: steroids, Protopic, and Elidel are not the best that science can do for eczema patients. Things will get better in the future, and it's up to people like us to make it happen sooner rather than later.

(What's up with that wig in the photo? The NEA shares office space with the National Alopecia Areata Foundation, which has a surplus of wigs generously donated by Revlon. I'm balding and wanted to feel, just for a moment, what it was like to have a glorious head of hair.)

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.

Thinking about a comeback

Hey all.

I have been thinking about returning to this blog--I miss keeping up with the latest research, and sharing ideas with people.

But as you might have read below, I am struggling with some neck and back trouble probably caused by computer use or poor ergonomics. My job involves sitting in front of a computer, and it doesn't feel good toward the end of the day, and I sure don't feel like aggravating it with more computer time after I get home and help feed the kids and put them to bed and do my prescribed physiotherapy. Plus I don't have much spare time anyway.

So bear with me--maybe I can write shorter posts during the odd lunch time; maybe I can do some video posts.

At least I feel like I owe you the second half of my interview with Gil Yosipovitch.

One new thing for now: did anyone notice this link, part of the NIH's campaign for public accountability? It's a list of all the NIH's research expenditures--I think their annual budget is $20 billion, but I haven't taken the time to add up the totals. The list shows money spent per disease, and there are a lot of diseases in the list. But there's one that seems to be missing: eczema. Is it really not there? Not under atopic dermatitis or some other name? Apparently not. Maybe it comes under psoriasis? Does anybody know?

Surely they can't not be funding eczema research. (I KNOW they are at least funding Donald Leung's multisite project.)

In which the author does something dumb

I heard recently from a reader, Jon, who related how his wife was able to clear up her hand eczema by quitting dairy and eggs. Jon sent me a photo of her palm. To anyone with normal skin, it would have appeared inflamed, but to me or anyone else living with eczema, it was obvious that her hand was in recovery. Yikes--I've never had it on my palms before, and hope I never do. I'm sure we all wish Jon's wife the best in controlling her hand eczema. It's a bummer to have to give up dairy and eggs, especially with Christmas looming, but a remission from itch is a fine present to get in exchange.

Even though I often write about eczema and food reactions, I'm not immune to doing dumb things myself. Here's one. I was barely able to type out that last post of mine (on Friday) because I was scratching the hell out of my arms. Recently, I've been missing real Parmesan cheese. Since I discovered that Parmesan gives me a terrible reaction, I've been making do with the Kraft version, which any Italian would consider an abomination. But it had been three years since I'd last had Parmigiano-Reggiano, and you know how food reactions can be maddeningly inconsistent. I thought I would try it again. I bought a hefty chunk at the cheese shop a couple weeks ago and started grating it onto pasta dishes. For a while, my body let me get away with it. But last Friday, BAM! after I'd eaten some, an otherworldly itch revved up in my forearms that scratching just made worse. (But try not scratching.) It was pretty funny, typing my eczema blog and stopping every few minutes to claw away like a demented monkey.

But somehow, I felt in control, knowing exactly what was causing the itch--the histamines in the aged Parmesan--and that it would ebb away to nothing overnight, as it did.

Won't do that again in a hurry.

* * *

Some relevant news out of the University of California, San Francisco last week, for anyone interested in that story about how children are less likely to develop eczema if their mothers, while pregnant with them, worked on a farm or lived with cats. UCSF researchers have found that the fetus has an immune system of its own independent of its mother's; and that the fetal immune system develops a tolerance to most foreign antigens to which it is exposed. (This prevents a reaction to the mother's cells.) Once the baby is born, its immune system switches over to fighting foreign antigens.

Maybe if you expose the fetus to cat dander while it's still in the mother's body, it develops a tolerance for it that persists after the child is born. I know that cat and dog dander are pervasive in our environment, so much so that virtually everyone is constantly exposed to them. Could cat dander by itself be responsible for a significant fraction of eczema?

* * *

This week, I'm proud to observe that End Eczema has passed 1,000 pageviews. Any blog of real standing gets several thousand pageviews per post, so I've got a long way to go!

Also, at least a few people are finding this blog on Google, which is good to know. For a while, it was completely invisible.

If you're wondering who your fellow readers are, here's the breakdown by pageviews:

United States    792
Canada        49
United Kingdom    40
Germany        34
Australia        31
Denmark        18
Malaysia        18
Singapore        10
Netherlands        8
South Africa        5

Thank you all for reading.  It's an hono(u)r to write for you.

You are not alone

A fellow eczema blogger, Cindy, posts that she's having a bit of an existential crisis, at least as far as blogging goes. She's got seven kids, three with eczema, which puts her in a different league from me. It's a wonder she has time to write anything. But it doesn't seem to be the demands of childcare that pose the problem. The problem, she says, is that

...I haven't learned anything new about eczema and I don't know what I can post that would be any help to others. And is it much help if what I have learned doesn't provide any significant improvement to our kiddos? Is that even too much to reach for, that eczema may be a thing of the past? I feel I have more questions than answers and have followed many leads that haven't led anywhere. Yet if I am just sharing my frustrations with eczema in our children, what is the point?

I can relate to a lot of what Cindy says. I feel like I am learning a lot about what science currently knows about eczema; but scientists are years from nailing down all the details. And cures lag behind knowledge by the time required for clinical trials. What I am learning about cutting-edge research isn't going to cure anyone.

There are practical benefits to getting the big picture of eczema, though. Since I began this blog, I've realized that using the right moisturizer is more important than I'd thought, and also that we ought to be using bleach, or some acidic cleanser (e.g. Sebamed, pH 5.5) to control Staph aureus on Voov. I'm learning and sharing useful information.

That eczema will someday be a thing of the past is not too much to hope for. But realistically, a "cure" won't be around for another generation, although a patchwork of discoveries will improve our quality of life incrementally. (The day there's an effective drug that shuts down itch fibers, I'm busting out the Dom Perignon.)

This occurred to me: what if we find that there is a magical barrier cream that, if you apply it religiously to your infant for three years, will prevent eczema for life? As a new parent, you're going to have to learn (probably, via genetic test) that your child is at risk of developing eczema. Then, if you don't have eczema already, you won't know that it's a serious condition to avoid at all costs. You may not think it's worth applying the cream, especially if it's expensive. So you won't use it. And then your kid will develop eczema, and you'll feel guilty because you could have done something about it. Compliance will be a significant issue, once a cure is discovered.

But back to the present day. As for blogging your frustration with eczema: that IS the point. We want you to share, because we have the same frustrations. Most of are isolated in our family lives, with our only connection to anyone who cares about eczema being through our doctors. We don't connect to each other much at all. The doctors can't show true empathy-- they have to maintain a professional distance. We who live with eczema need to hear from each other so we can share stories, lend support, and know we are not alone.