Fingernails again/Atopic Dermatitis Research Network update

A nail-cutting night again for Voov. She's been mangling herself again. Not too terribly, but her hands have gotten all red and rough. On nail-cutting nights, at bathtime Hidden B closes the toilet lid and sits on the top with Voov in her lap, and cuts her nails with the clippers. Shmoop's job is to choose a pile of books for me to read to distract Voov. This he is very good at-- he picks the baby books, such as "The Going to Bed Book" or "Moo Baa La La La," rather than the ones he wants me to read when he gets HIS nails cut: National Geographic illustrated titles such as "Eurasia" or "The Mammals" (he likes the exotic animal pictures).

There's one issue with Voov that is somewhat disconcerting to us. Her back is, to put it delicately...um...a little hairy. There's no doubt that she's a mammal. Occasionally we wonder whether the steroids we're putting on her--which are relatively mild, but still known to have hormone-mimicking side effects--are doing something weird. Or that maybe the stronger steroids I put on myself are lingering on my hands and somehow getting into her system.

But the furry bits (we're talking downy, not out-and-out hirsute) bear no relation to where the steroids are going on. We haven't been putting steroids on all over her, which is when systemic effects are supposed to occur. And Hidden B tells me that her sister was always "downy," so maybe it runs in the family.

* * *

I was wondering what was going on with the Atopic Dermatitis Research Network, the $31 million multicampus NIH-funded consortium to investigate why eczema patients are vulnerable to MRSA. The ADRN is the new version of the Atopic Dermatitis and Vaccinia Network, a large study now wrapping up.

So I wrote to Donald Leung, the scientist in charge of the ADRN. (He's at National Jewish Health Center in Denver.) Judy Lairsmith, the ADRN's program manager, responded:

We are still working on setting up the Registry/Genetics protocol for the Atopic Dermatitis Research Network. This is a long process as you can gather. The protocol has to incorporate input from all the participating centers, plus the data coordinating center Rho, Inc., and has to go through several layers of approval at the NIH. Current plans are to start enrolling in February or March. Once the study is approved by NIH it must be approved by the [institutional review boards] at each of the institutions where subjects will be enrolled.

During my Ph.D. I had to get an animal experimentation protocol approved by a national laboratory. I filled out a lot of forms. My brain boggles at extrapolating from my experiment to the Kafkaesque bureaucratic demands of a 10-institution trial in human subjects. Judy must be a machine.

We'll have to wait a couple months yet to see exactly what trials will be done where. Participating institutions are all over the U.S. (list at the bottom of this link) so there's a good chance there's one near you.

I'm taking a break from blogging until January 3rd. Back just in time for New Year's resolutions! I know you'll be making some. Until then, enjoy the holidays.

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.

Eczema, a family affair

Did I mention that eczema runs in my family? Those that I know for sure have it, or had it, are my father's father (deceased), whose scratching and ill temper were legendary; a cousin; my sister; me; and my daughter Voov.

My grandfather was a sea cook and a veteran of World War I. His life was hard and eczema didn't make it any easier. Then eczema skipped a generation, fortunately for my parents, and in the interim science and medicine made great improvements in emollients and steroids. We've had it much better than he did. But let's not have the impression the problem is solved. I believe some day we'll have complete control over the demon itch.

Our family probably shares a filaggrin mutation. Ten years from now, when you can get your genome sequenced for a hundred dollars, I bet that's what we're going to find. In future posts I'm going to explore what filaggrin does, or in our case doesn't do, for skin. And I'm going to ask the scientists studying filaggrin how they think their discoveries might lead to therapies or cures.

This blog is soon going to become, like eczema, a family affair. I've invited my sister to contribute posts. She's a resident or whatever you call someone who is undergoing the legalized hazing that the medical establishment enjoys inflicting after you graduate with an MD. She'll add medical legitimacy. She gets to pick her own moniker--hopefully not something to do with ferrets (she doesn't have kids at the moment, just pet ferrets). Until then, I'll call her Dr. Sis.

Dr. Sis lives in Newfoundland. So this blog is a California-Newfoundland axis. We can speak with authority on both endless summer and endless winter. The mind boggles to realize that the two regions share a continent and a language--though the latter is debatable, if you've ever met a real Newfie.