Eczema Boot Camp: Suzanne’s Story

Suzanne’s eczema began when she was 13 years old. Now 49, she lives on the West Coast with her husband and children. In terms of health history, there are significant atopic triad conditions (asthma, allergy and eczema) on both sides of her family. Two of Suzanne’s three sisters have significant asthma, there are serious allergies in the family (environmental, animals, and some foods), and there is eczema on the maternal and paternal sides of her family. She had an older sister (now deceased) who had serious eczema from age one and has another sister whose eczema began as a toddler. Here are Suzanne’s perspectives on the Eczema Boot Camp regimen.

Why did you try the Eczema Boot Camp techniques?

My head-to-toe atopic dermatitis (AD) started at age 13. The first 10 years, I denied I had serious skin issues. The next 15 years, I started minimal skin care (liquid moisturizers, topical steroids), took oral antibiotics as necessary, itched and scratched daily — and prayed for improvement as I neared midlife. My eczema worsened over the years, but nonetheless I was still able to cope.

From 2006 through 2011, rather than one thing at a time, I tried an “all of the above” strategy. More specifically, I did the following:

• Joined the National Eczema Association. Started soak-and-seal bathing. I increased the use of topicals, thicker moisturizers, and worked harder at stress management—including seeing a psychologist.
• Closed up our house and turned on the air conditioning. Increased indoor time and decreased outdoor time, even skipping my kids’ outdoor soccer, football and baseball games.
• Redoubled efforts for dust-mite minimization: new bed covers, more hot-water washing and hot drying, no decorative pillows on the bed.
• Added a daily probiotic (one billion cultures of Lactobacillus GG), and 2000 I.U. of vitamin D.
• Discontinued exercise to minimize itching.
• Began allergy shots for the third time. Added Xolair shots. Also tried CellCept and cyclosporine.

Not much of the above seemed to help significantly, and my blood pressure rose with the immunosuppressants. In the summer of 2011, scalp infections caused my head to shed 75 percent of its hair within six months. every day I considered checking myself into the hospital, but I tried to “save” it for when I could not take another step. My husband and children were increasingly concerned about my health and my state of mind. The word “disabled” was seeming to fit. I was frightened; I was not sure how I would live the next few weeks, let alone decades. I needed a game changer.

What was your experience with the Eczema Boot Camp approach?

The Eczema Boot Camp regimen perhaps did not save my life, but it gave me back my life. Wet wrap therapy is the most effective tool I’ve found after 36 years of struggle. I have regained a sense of control and how to help myself— and now have confidence in my appearance. I can better manage my schedule and responsibilities, make plans, and enjoy life again.

I learned how to do a wet wrap at National Jewish Health (NJH) in Denver, Colorado. The adult program was eight days long. I stayed in a hotel each night and spent most of each day at the clinic. The doctors and nurses, and the facility, were amazing. I can’t say enough good things about NJH and how it turned my life and health around.

How quickly did you see results—if you did see results?

My skin was noticeably calmer, smoother, and more comfortable within the first day, after four wraps. But I was un- convinced. I cried throughout the first day and hated every minute of the process. After four more wraps the next day, I became a true believer. My skin was truly healed for the first time in decades. Healed! By the end of my eight-day stay in Denver, I felt reborn.

The schedule for the clinic looked like this:

• Day 1: Consultations with an AD specialist, an allergist, a lung specialist, and a psychologist. Blood draws, testing, and medical histories. Drove myself to Target to purchase the clothing used for the wet wraps (it is possible to bring the clothing with you in advance).
• Days 2–3: Four baths and wraps per day at the clinic (8 a.m. until midnight), then back to the hotel to sleep. The AD specialist and allergist monitored my progress; nurses were primarily in charge of the wraps.
• Days 4–5: Two to three wraps per day: one at the clinic, and one or two back in the hotel before bed- time. During the day (before or after the wraps), the doctors continued evaluations and discussed test results. I attended group sessions with other adults on managing AD, and began biofeedback and counseling sessions.
• Days 5–7: One to two wraps per day in the hotel only. During free time I started to explore local sights, continued education classes, and continued practicing how to wrap myself on my own.

By the time I went home on Day 8, I could handle all aspects of the wrap unassisted. The tears had stopped. I had a sense of peace about the Eczema Boot Camp methods, and the knowledge that wraps had made a huge difference in my skin’s feel, look, and health. My family could not believe how good my skin looked upon my arrival back home.

What tips would you share with others about this regimen?

It worked especially well for me to begin wet wrap therapy in a hospital or all-day clinic environment. (If there is a facility close to your home, then that minimizes the hassle and expense of traveling). First, the process is unglamorous and somewhat complicated, so the encouragement, positivity, and confidence of the nursing staff were essential to keep me from quitting early and going home before seeing the full benefits. Second, the clinic staff helped with laundry (while I sat wrapped in one set of clothes, the staff laundered my second set to be ready for the next bath) and other logistics. They answered questions, and they urged/pushed me through when I got discouraged. They told me stories of how many patients they had helped. They painted pictures for me about how happy I would be, and how good I was going to look. I didn’t believe them initially, but their encouragement kept me going until I saw and felt the benefits myself.

Before trying EBC on your own, I highly recommend that you seek out a doctor or clinic that specializes in AD. Find one who gets excited about it and wants to help you—not out of sympathy (which is nice but ineffective) but from a position of confidence and knowledge. The Nea Scientific advisory Committee is full of doctors who love to help people with aD and have new ideas and approaches.

Here’s how Eczema Boot Camp at NJH worked for me, along with some tips if you choose to start this regimen in a hospital or clinic away from home:

• Each wrap took about four hours: a half-hour bath plus a half hour of meds and wrapping, followed by two+ hours of sitting while wrapped. Then I would undress and repeat. Intensive steroid topicals plus the wraps healed my skin the first two days. after my skin was moist and calm, on the third day, I was able to maintain a smooth barrier by switching to the nonsteroid Protopic.
• There is some upfront investment needed for the wet clothes you put on top of the medication; and the dry clothes that go on top of the wet ones. I bought my wet and dry clothing at Target for minimal expense. (You may have things in your closet you can use; take them with you if possible.)
• If you plan to purchase what you need near the clinic or hospital, consider bringing an empty duffel bag for your return trip to hold extra medications and clothing used for the wraps.
• Take a cap or hat to the clinic for wet hair at night while heading back to the hotel.
• Bring quarters for laundry in the hotel when you start doing the wraps on your own.
• Consider bringing a family member or friend along to run errands for you, bring you a snack, or watch movies with you during the wrapping.
• Try to clear your calendar so you can use your cell phone or computer minimally for at least the first couple of days. The wraps and the process are time consuming and intensive, and you will want to try to focus on wellness and relaxation as much as possible—at least for the first 48 hours.

Here are some tips for continuing wraps at home as needed:

• Remember the most wrapping you’ll do is at the clinic. The goal is to do a wrap once a week or even less by the time you return home. You may even be able to stretch the time longer between wraps. any wrapping you do at home will benefit you; it isn’t all or nothing. Keep it manageable at home, so you don’t get discouraged by the time and the work. Keep focused on how great your skin is after the wrap.
• Do try to make the home wraps as pleasant as possible. The nurses at National Jewish Health recommended that I call my home wrapping a “spa” or “beauty session.” Light candles, play music, listen to a book on tape, or watch a movie—whatever helps pass the time quickly and meaningfully while focusing on health and relaxation.
• Stay warm when wrapped at home. I try to rest/read/ work under an electric blanket to keep from getting chilled during the two hours of wrapping. (If I wrap only my body and not my head, it’s easier to stay warm).
• Now that my skin is more stable, I find it beneficial to wrap only one part of my body (my head, for example, or my hands if they hit a rough patch). Frequently I do this at night, which takes less time, and only my husband sees me. If I wrap my head, I cut a large section of a soft t-shirt, and dampen that, then put a ski cap on top. If I wrap my hands, I wear damp cotton gloves under soft fleece ones. Sometimes I’ll sleep all night. at other times I get up after several hours, take off the wet items, moisturize my hands, and go back to sleep.

Here are some tips about bleach baths:

• I do take bleach baths when I see the first signs of red, infected bumps, and they help a lot.
• Initially, I found that I was taking them too frequently, and they were drying.
• I have learned to take them only when I see signs of an infection.

You might benefit from exploring the eczema boot Camp regimen if you answer yes to more than one of these questions:

• Reading this issue of The Advocate brings on tears of frustration or sadness about your own struggles with AD.
• You have checked yourself into a hospital (or considered it) because of your AD.
• You worry about how you will live the next 5 or 10 years with AD.
• You are dependent on bursts of oral Prednisone to control your AD.
• You have made substantive life decisions (marriage, travel, occupation, whether to have children) around your AD.
• Daily issues like work, using your hands, what to wear, or getting through the day are complicated regularly and substantively by AD.
• You have tried one or more aggressive approaches to control your AD—cyclosporine, CellCept, soak-and- seal bathing, allergy control—and either find they have not helped significantly, or you are dissatisfied with their side effects.
• You are desperate for improvement and feel perhaps at the end of your rope.

Is it worth it? Why or why not?

Wet wraps are absolutely worth it for me. Even if I stretch the time in between them, I have the confidence a wrap will help.

Okay, I agree that the Eczema Boot Camp methods are messy, unglamorous, low tech, time consuming, and somewhat uncomfortable. But the same can be said of exercising, dying hair, whitening teeth, getting allergy shots, or even managing diabetes. Keep the greater good in mind and know that it’s worth it.

Between wraps I feel more positive about life and am much more productive and less worn out. Plus I feel extra good knowing the side effects of topical steroids are far less than other oral immunosuppressants. I have gone as long as a month between wraps since leaving Denver. In a perfect world, I would do EBC once a week.

My hair is coming back healthy and full. I am able to exercise moderately again and spend some time outdoors with my kids without putting my skin over the edge. This is the best I’ve felt in 20 years.

Learn more about Eczema Boot Camp.