Friday, December 10, 2010

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.

3 comments:

  1. Hi there! Are you mostly an often online user or you prefer live communication?

    ReplyDelete
  2. Online is best until we both know who we are talking to!

    ReplyDelete
  3. Eczema might be a vitamin d3 deficiency. Look it up on the internet and youll read many people that have cleared their eczema by taking vitamin d3. Makes sense because it is recommended that eczema sufferers get sunlight exposure to help clear out their eczema. Well what does sun give you? Vitamin d! Hence you can take it in the form of pills and can actually control how high of dose you take.

    ReplyDelete