After you’ve been tormented by eczema your entire life, and always avoided talking about your embarrassing condition, and dealt with doctors whose solution is to prescribe more steroids and expect you to go away happy, what is it like to spend two days in the company of some of the world’s leading eczema experts, talking about nothing else?
It’s pretty intense, I found out last weekend at the HOME (Harmonising Outcome Measures for Eczema) meeting in San Diego, California, where I and four other patient representatives helped clinicians and pharma reps from the US, UK, Germany, Japan, Brazil and other countries define how eczema severity should be characterized in clinical trials.
I’ll cover the technical details in a later post. Right now I just want to describe the experience.
I had been invited by Julie Block of the National Eczema Association. She introduced me to Gil Yosipovitch, Jon Hanifin and others. My initial feeling was one of awe. Many years ago I realized that scientists were actually studying itch and eczema when I read a New York Times article about Yosipovitch’s work. Now here I was on Saturday sitting with him and Block, eating fish tacos and getting my balding head sunburned.
And then Hanifin walked by. He developed the original criteria, now used worldwide, for diagnosing eczema in the clinic. In the conference room, was that Eric Simpson of Oregon Health Sciences University? And Hywel Williams of the University of Nottingham, the UK leader in eczema research? It was surreal—the equivalent for a tennis fan, say, would be being in the same room as Roger Federer, Rafael Nadal, Andy Murray and the Williams sisters.
Also present along with me were several other patient representatives, three of whom either had eczema themselves and one who was the father of two affected children. Among them were Stephanie Merhand, founder of l’Assocation Francaise de l’Eczema (from Toulouse, France) and Rosemary Humphreys from the National Eczema Society (in the UK).
At first, it was a bit strange to meet people with whom you have nothing in common but a medical condition, but over the course of the two days I came to realize that it was not so much the eczema we shared but similar life experiences: the days and nights of itch, the social anguish.
During a short car ride, Tim Burton (a UK patient) and I traded stories about the various pharmaceuticals we’d inflicted on ourselves. It was hilarious. I’d given up on Protopic because it burned so badly. Tim uses it on his face. “It’s like holding your face to a three-burner fire for a couple weeks, but it eventually stops,” he said. Sounds like fun! I informed him that the best way to take prednisone was as an injection in the buttock.
In the working sessions I had cognitive dissonance hearing my condition discussed openly and unemotionally. I’ve spent nights tearing with my nails at scalp, my arms, my feet. I’ve endured, as anyone with chronic eczema does, the social pain of high school and university, the outings and activities missed, the relationships that never happened. Eczema is something that makes me want to hide in the basement. And here were people calmly displaying Powerpoint slides and droning on like it was a graduate seminar in statistics or comparative literature.
The jargon really was incredible. In casual conversation you were supposed to know what “xerosis,” “oedema,” “erythema,” and other words meant. You were supposed to be familiar with the acronyms for what seemed like fifty different clinical techniques. You were supposed to know the difference between “signs” and “symptoms,” which turned out not to be so clear-cut.
At one point I was asked what I thought about a topic they’d been discussing for fifteen minutes. I had to admit I hadn’t understood a word. It felt a bit like being a laboratory rat listening to scientists describe experiments they’d done on you.
That is why we patients were invited—to humanize things. “You might not realize it, but you are changing the tone of the session just by being here,” Roberto Takaoka, a dermatologist from Brazil, told me. Several of the presenters opened their talks by showing pictures of children or adult patients and reminding everyone that we were doing this for the patients. Apparently many doctors tend to “treat the disease, not the patient” and meetings without patients can become even more abstract and academic. Rosemary Humphreys told me that it she was on a crusade to get scientists to use the word “patient” instead of “subject”—“I’m a linguist and I know what the difference means,” she said.
At the same time, I remarked that we patients were treated as equals by the academics at this meeting. And everyone was committed and attentive and sincere. If anyone was checking their iPhone it was me. That says something.
As time went on, I realized that I was surrounded by some of the world’s top dermatologists and could get free consultations for myself and my kids just by asking. For example, if your daughter says that Cerave (a ceramide cream) is burning her cracked hands, you can get the clinical benefit of the cream by first rubbing her hands with olive or safflower oil, than applying Cerave, and then putting Vaseline on the cracks. And apparently 3M has a great new surgical tape that sticks to anything but doesn’t hurt the skin when you peel it off. You can use it like a Band-Aid on greasy skin.
It was sobering to know that after having gone to this meeting I now know as much as most people on Earth about the state of eczema therapy at the moment and in the near future. There are no miracle cures in the offing. But there are many intelligent, motivated doctors and scientists working on our behalf to make things better. Not as many as there should be, and they are not funded nearly well enough. We need to get involved to let them know how important this work is and to make sure they get the support they need.