Thursday, September 30, 2010

Prizewinning lawsuit

Voov isn't that keen on walking yet. She can manage about two or three steps before swaying wildly and pitching forward or back. When in motion she resembles a drunken sailor. Naturally we want to see as much of this as possible. Bath time, and she's standing there buck naked as I coax her to walk to the tub. But she just stands there scratching at her side. I realize I'm doing the same thing--not the naked part, the scratching. We're quite the mirror image.

(Author takes break to give left elbow a good scratch.)

I was thinking about Perry Gottesfeld, the guy who sued the tar shampoo makers back in 2000 or so. He seems to have acted in good, if possibly misguided crusading faith in concern about public health--and his suit was apparently absorbed into one brought by the State of California. The result, of course, is that you can't buy tar shampoo in CA any more, and certain shampoo manufacturers have changed the active ingredient in their products. This despite the fact that the FDA has determined that the concentrations in shampoos pose no cancer risk.

For me, tar shampoo is the only option. The alternative is nonstop crusty itchiness. Can anyone else who uses tar shampoo imagine using a regular shampoo? Since I now have to plan my shampoo purchases online months in advance, and pay a delivery fee, I would like to present Perry Gottesfeld with a Mark Twain Steel Trap Award, on behalf of all those in California who suffer from eczema and psoriasis.

(Perry, this one's for you.)

Anyway, the point of this blog is that even tar shampoo is only a holding measure. We shouldn't be satisfied with the half-assed chronic eczema management that the medical establishment is dictating for us. Moisturize, use soap sparingly, use steroids to control flares (note: I'd been using steroids for a decade before anyone told me either about side effects or how to apply them properly), avoid triggers. Etc. And, for no good reason, you'll still wake up some morning having scratched the hell out of your hands or the inside of your elbows or whatever. There are better therapies out there to be discovered.

Next post I am going to announce another prizewinner. Stay tuned.

Wednesday, September 29, 2010

Root canals and wankers

This will be a short post, since I'm feeling the effects of having a root canal today. Nothing like a root canal to remind you of the difference between acute and chronic conditions. The anticipation is worse than what actually happens. OMG what's that drill attachment? That high-pitched whine! The weird smell! I'm sure he hasn't used enough anaesthetic! ...And then comes the bill, and three hours of a face that feels rubbery and inflated on one side.

Speaking of bills, I'm not sure eczema is an expensive condition to have, if you've got a choice. As an adult, I buy a couple tubes of steroids every few months, plus a regular supply of moisturizers and my favorite tar shampoo. There are more pricey afflictions out there. The real cost is in quality of life and self-esteem.

Tar shampoos-- I intend to spend a few posts on that topic. I live in California and someone here, a few years ago, sued companies that make tar shampoo because they didn't have a warning label on the bottles saying there was a remote chance you'd get skin cancer. (Skin cancer from weird organic chemicals is no fallacy-- chimney sweeps were prone to scrotal cancer caused by phenolic compounds in soot.) But in medicine the proof is in the dosage and the statistics and I believe in the hundred or so years that tar shampoos have been used, no studies have shown any correlation between usage and cancer of any sort.

Anyway this guy sued the company and won (not sure about the monetary settlement) and as a result no makers of tar shampoos will sell their products in California now. I remember buying tar shampoo in Santa Barbara in 1999 and now you can't find it anywhere-- I get it online.

The gentleman concerned-- as Mark Twain said,
"if I had his nuts in a steel trap, I would shut out all human succor and watch that trap until he died."

Tuesday, September 28, 2010

First steps

Today Voov took her first steps. She's 17 months old and a bit slow to get on her feet. Hidden B has been taking her to physical therapy, and she had an appointment today, which is when she chose to demo her mad walking skills. Hidden B called me at work--sharing good news, for once, instead of the usual "Shmoop's temperature is 102 degrees" or "I think Voov might have swallowed a piece of Lego."

I get home, and demand that Voov walk for me. She complies--a few rickety steps, wide crooked grin, giggling at the attention, and collapses into my arms. We make her go back and forth between us until it verges on child abuse. In a few weeks she'll be running around the house terrorizing Shmoop, having figured out that her hands are free now to grab things and pull hair.

Tonight it's my turn to do Voov's bedtime. We alternate: each parent gets boy one night, girl the next. First they take a bath together. Each kid has pros and cons. Shmoop's pro is that his skin is perfect and all you have to do after the bath is put him in diaper and pajamas. His con is that he requires a long story (he's keen on animals so you sometimes end up going through a National Geographic book reading all the photo captions) and then a song and then a recap of what he did today. Voov's pro is that she only needs to be read two short stories and do a brief stint of nursing. Her con is that you have to put steroids (Desonide 0.05% ointment) on her flares and then lube her all over before pulling on her nightclothes, trying not to get grease all over the table and walls. While she flails around clawing at herself.

Tonight, it's Desonide for her right foot and splotches on her torso. And socks to pull over her pajama bottoms so she can't scratch her foot, because we've run out of the pajamas with feet.

Of late we have been putting CeraVe on her left side (all the way up--her face is divided into halves) and Vaseline on her right side, to see if there's any difference. We're not sure yet. CeraVe is about $17 a jar compared to $4 for Vaseline, so you can see why we might care.

Monday, September 27, 2010

Second thoughts? Nope

Since my first post I've certainly had second thoughts. What the hell was I doing, signing up for this? Raise a million bucks? I was watching an episode of Life on DVD with Hidden B, and suddenly I broke out in a cold sweat. It's like the time someone signed me up for the talent show in grad school and there's a week to go and I still haven't figured out what I'll be doing; all I know is that I'll be making an ass of myself in front of a lot of people.

Fortunately the internet allows me a degree of anonymity. I'll be making an ass of myself but I'll have a paper bag over my head. I'm still serious about this thing.

What really freaked me out at first was not the thought of writing, but the thought that at some point someone might write me seriously and offer funding, but demand that I tell them what I planned to do with it. Let me be perfectly clear: nobody's handing ME money. I'm going to set up a foundation with pro bono legal advice, and get a first-class scientific advisory board. My model for this is the Multiple Myeloma Research Foundation--something I have to look into in greater detail-- but those guys have it worked out right. They distribute money, but they make damn sure the scientists receiving it do what they're supposed to. They set goals and run the foundation like a business.

A random thought that occurred to me. When I said $1 million, I meant $1 million USD. (I'm a dual Canadian-American citizen and ought to make the distinction.) But that's just an amount. The currency doesn't matter.

What might matter, I think, is where drug trials get done, when it comes to that. Drug trials probably have to be done in the U.S. If the FDA doesn't approve a drug it won't have the necessary market potential to make it viable to produce.

Friday, September 24, 2010

Let's start with $1 million

What is the purpose of this blog?

Hey, I'm allowed to be ambitious.

I want to end eczema. Nobody should have to live with this nasty condition. It can make your life hellish; it can make you wish it was over. I know all about eczema. I was born with it about 40 years ago and it has been with me ever since. It's in my family. My father's father had it. A cousin has it. My sister does. And guess what, I've managed to pass it on to my daughter.

To start with, I want to raise a million dollars for eczema research. That's right, a million bucks. This is not a number I associate with any bank account of mine. But I work at a major research university and I know roughly what it takes to get a real project that produces results off the ground.

In fact, a million isn't anywhere near enough to start solving this problem. But we have to start somewhere.

In posts to come I will talk about what we might get started with a million dollars. Now let me say what inspired me to get off my ass and write.

Last year I signed up for the newsletter from the National Eczema Association. These folks are wonderful. I felt like "at last, here's a charity that means something to me." I'm always getting unsolicited phone calls from foundations for breast cancer research, AIDS, veterans, policemen, terminally ill children. And I know that these are all worthy causes. Hell, I have relatives who have died from cancer and someone dear to me is living with it. But I live every day with my personal curse and I never hear about anyone doing anything for me. Now it's not even about me--it's about my children and (I hope) grandchildren. And anyone else who lives with the pain and shame of chronic itch.

So yesterday I get the NEA's annual report in the mail. It lists all their accounting numbers and the times they were mentioned in the media. In short, eczema is not on the media map. And the NEA's budget is too small by a factor of 10, if I'm being generous. Total revenues for fiscal year 2009: $529,668. Total expenses: $525,582. Of the expenses, for support, education, and awareness: $372, 415. For research: $30,961.

That's right, thirty-one thousand dollars.

My business is science, and I know $31k is not enough to pay a single graduate student salary for a year. (I also know that the National Institutes of Health are the major research funding agency in the U.S., and I would like to find out at what level they're supporting eczema research.) But I am convinced, and I have evidence, that patient advocacy groups can make a difference. For one thing, the NIH tends to support basic research and loses interest once that research becomes useful for anything. Patients themselves only care about results.

I know that wealthy philanthropists regularly write checks for many millions of dollars. One or more of these people either has eczema or has a child or grandchild with it. And they might like to donate, but it hasn't occurred to them that they can, or they don't know where to give, or which scientists or doctors are really worth supporting.

I'm going to find the big donors and get their money to work. My hope is that this blog helps them find me. I'll work out the details as I go along. Are you with me?