In his own words: living with eczema
Ben S. is a 41-year-old health care writer and public relations professional who lives and works in Iowa. The Cleveland native remembers struggling with eczema when he was just five years old. He has lived through many bouts of the chronic, itchy skin condition, and maintained an active lifestyle of running and practicing yoga regularly. Ben finally found hope, and lasting relief from his symptoms, which had been so visible they made him depressed and irritable. He offers insights into his lifetime of living with eczema.
What was your first sign that something was wrong? What symptoms did you experience?
I am pretty much an eczema lifer; I was a child when it first appeared. The condition would ebb and flow through the years. When I was young, it often cleared up over the summer. Winters were tough. During my 30s, I had many difficult bouts in all the seasons.
My symptoms are itchy, red, swollen patches and regions, often with a secondary staph infection. Steroids and antibiotics would clear them up, but those aren't safe long-term treatments, so my symptoms would usually reappear in a few weeks.
What was the diagnosis experience like?
I was so young I don't remember being diagnosed.
What was your initial and then longer-term reaction to the diagnosis?
It's just something I've always lived with. The fact that it got worse when I was in my 30s was particularly frustrating. Many doctors thought it might improve with age, especially after adolescence.
How do you manage eczema?
Currently, I use an ointment called Protopic, a new innovation in eczema treatment, which keeps me relatively clear. But, I think I have tried everything in the book. I started using Protopic in a clinical trial in June 2000, and testified to the FDA in approval hearings for the ointment in November 2000. I also use lots of moisturizers.
Did you have to make any lifestyle or dietary changes in response to eczema?
Being a vegetarian—I've been one for 11 years—didn't help. I tried herbs and acupuncture and those didn't help. Extremes in weather exacerbate the condition for me. No climate helped me (Miami, DC, Cleveland). I'm doing very well now in Des Moines, but I give my current treatment credit for that.
Did you seek any type of emotional support?
A few months before I discovered the Protopic trials, my allergist declared that I had the worst adult eczema he'd ever seen. That was quite dramatic given he was probably the most popular allergist in DC. I had been miserable and my bad skin was highly visible.
I wrote an article for The Washington Post about my search for relief. My articles about eczema are edgy, dark and humorous—that is how I often dealt with the condition. The first piece I wrote was an exorcism of sorts; it highlights the trauma of my highly visible condition.
Does eczema have an impact on your social life?
Eczema could make me very anti-social and irritable, so I know I made a lot of people angry during the last decade when I was badly broken out. However, since I started using Protopic, I've done amazingly well. Friends and family are amazed at how good I look.
I've been sort of a poster adult for eczema. I have written many articles about it and I spoke at the NEASE (National Eczema Association for Science and Education) patient conference last September. I wrote a follow-up Washington Post article to report on my amazing transformation. Last November, I did a media event in New York City with other eczema sufferers and hosted by Deborah Norville.
What advice would you give to anyone living with eczema?
Be your own advocate. Different treatments work differently for different people. Virtually all treatments carry risk, even though Protopic has been safe thus far, and that is a major benefit, the longer-term effects are still not entirely known.
The quality of dermatologists varies dramatically. You have to work to find one that responds well to your particular needs.
Also, people have different triggers—climate, food, stress. But the triggers can change over time, as can the condition. Eczema seems to have a mind of its own. Do what it takes to be comfortable, despite what everyone else wants or thinks.