by Stephanie Knox
National Chair, Itching for a Cure, National Eczema Association
I am itching for a cure — a cure for eczema.
I know that most readers will know that eczema is a rough, red patch of itchy skin, but do you know that eczema can cover your whole body? Do you know that tiny babies who have eczema sometimes scratch until they bleed? Do you know that many adults get eczema on their hands, causing cracking and soreness that can be debilitating? Most surprisingly, do you know that eczema can lead to feelings of sadness, frustration, and isolation? According to the National eczema association, thirty million Americans live with this disease. For some, eczema can be managed and triggers can be avoided. For others, eczema is a chronic, recurring disorder—and these are the people for whom I am itching for a cure.
My twin sister Daphne had eczema growing up—mostly on her arms, but she had dry skin all over. I heard her scratch until she bled from her eczema breakouts. When we were very young, I used to lay in bed with her and pick at her dry, dead skin for her because she said it helped. I used to scratch it for her when she was tired from scratching. I watched kids make fun of her, say she had the cooties, and generally just make her life more miserable than it was already due to lack of sleep. She remembers those years with a heavy heart and maybe a few leftover issues (just a few)…. but rest assured those nights of scratching, the bloody sheets, and the mean comments left an impression on both of us. Today she is a nurse and struggles with hand eczema and chronic dry skin. Crisco and saran wrap nights as a child have turned into expensive emollients and creams as an adult to battle the itch that still has not stopped.
Eight years ago, my husband, Scot, and I were blessed with our precious daughter. Paige has what my sister calls a “pixie” personality—she is always spreading pixie dust with her smiles and charisma. We found out very early (when she was about 10 months old), with the first angry red patch of skin, that she would have eczema. Just after a life-threatening food allergy diagnosis for Paige, the spot here and there turned into full body eczema. For the past eight years, I have had many sleepless nights with Paige, rubbing her legs to soothe the itch and rub- bing her face and head to distract her from the itching in her legs and arms. Even with a great dermatologist, we battle the itch every day. We have figured out the best way to get blood out of purple gingham sheets and lime green flannel blankets. She has had staph infections as a result of her scratching and even a few bouts with MRSA, followed by nasty antibiotics. We’ve tried frequent baths, non-frequent baths, bleach baths, baking soda baths, oatmeal baths—you get the idea. Lotions, creams, and ointments line our cabinets. We wrap Paige in what we in the eczema world call a “wet wrap” and she resembles a little mummy. The pigment in her skin is polka-dotted, leading to lots of questions from friends and family. She gets hives on top of her eczema and scratches it until it looks as if she’s been in a briar patch. Her skin has hardened in the worst spots, making it look like the skin of someone much older than she is. She rarely complains, just asks for band-aids a few times a day (we go through a lot of band-aids!). She often keeps band-aids on very bad spots so others won’t see them. Her teacher keeps lotion in her desk for her for very itchy times, and a cool paper towel from a friend on the playground is sometimes the best relief. Paige and other eczema sufferers live a life that most of us do not understand—those of us who take our smooth skin for granted.
Is she going to grow out of that, Stephanie? Is that contagious? What’s that rash? Paige, you must fall a lot! You have a lot of scabs! Why is she limping? Did you put lotion on that? Did your cat scratch you up? What are you putting on that poison ivy? Why doesn’t her skin tan? Paige, what is wrong with your legs, girl? Bless her heart.
People who have eczema to the degree that Paige has (i like to call it super eczema—the kind that isn’t just a patch here and there) live it every day. Every single day. Lotions, creams, topical and oral steroids, and constant well- meaning advice from others are part of a daily lifestyle. Ruined walls and furniture from the thick petroleum-based products and heavy moisturizers are just a part of life— like scuffs on the floor from living with a tap-dancer or marks on the wall from the basketball player who can’t stop bouncing. Paige limped when she was a toddler due to cracks in the skin in her feet and toes. She left a note to a housekeeper in a hotel in Pennsylvania that read, “sorry about the blood on the sheets. I have eczema.” she says to me every few months, when her eczema is especially flared, “I hate my skin. It hurts, mommy. Please make it stop!” she sometimes sleeps until 10 or 11 in the morning—and I know she must have had a sleepless night of scratching. She struggles with outdoor activities due to overheating and gnats, which hover around her broken skin. The worst thing is that I am her mom and sometimes I just can’t make it stop.
In the summer of 2010, we found the National Eczema Association (NEA) and attended the NEA Patient conference & Kids camp in Chicago. Paige got to meet other kids like her—kids who scratch while they are talking to you and can’t stand still because they have to bend over and scratch their legs. My husband and I talked with adults who live their life with super eczema, and we asked them questions to help us better understand what Paige goes through and how she feels. Our son, Patrick, went to the teen camp, where he visited Navy Pier in Chicago with teens with eczema or teens like him, who have siblings with eczema. It was a life-changing experience. We all realized we are not alone in the war with this disease. What a weight is lifted from your shoulders when you realize there are others like you, fighting the same disease, the same sleepless nights, the same stares. The NEA Facebook page is now a regular stop for me, as I read stories, learn, and try to help others in their lives with eczema.
I have participated in many walks for charity—I even walked 60 miles in three days for breast cancer! I said to my husband, “Scott, I want to walk for something we live with every day. I want to walk for eczema. I want a cure.” I emailed NEA and asked them about a walk in my area to benefit NEA and the people with eczema they serve. it took a few days before they replied, during which time I became excited at the prospect of walking! NEA replied, “There currently is no walk for eczema. We would love for a motivated volunteer to initiate and help us plan our first walk.”
Could I do it? I knew from past experience that participating in a walk is hard work, particularly if you want to raise a lot of money. But I also knew from experience that walking for a cause can be a positive outlet for frustration and stress. I asked Paige about the attention: would it embarrass her for our family to go on this journey and draw so much attention to her personal battle with eczema? With NEA, we came up with a name for the walk: Itching for a Cure. As we pondered the possibilities, I finally got my answer when if went to put Paige to bed one night and there was a homemade sign in her 8-year-old handwriting taped haphazardly to her door. It had two handprints (she had traced her hands) on it and in all caps said, “Itching for a Cure.” I took a picture of her sign, sent it to NEA, and said, “We’re in!”
The rest is, as they say, history. We haven’t looked back. Quickly, a committee of volunteers was formed called the E-crew—friends who would volunteer to go on this journey with me, giving their time and support to a cause they didn’t know much about, just that it had been a battle for little Paige her whole life. The folks at NEA and I could not contain our excitement over planning the first-ever national walk for eczema. We would all be pioneers! Our community has a walk for some type of charity almost every weekend; it only takes a look at the city calendar to see that. But no one, ever, (ever!) has held a walk for the National Eczema Association to benefit adults and children with eczema—and we would be the first! People with eczema would come from all over the country to participate in a walk that would help eczema sufferers sleep a little easier and help others understand them. WOW.
Eczema keeps mothers and fathers up at night trying to soothe their babies, it worries siblings, and it exasperates grandparents and friends. Eczema is a disease of the skin, but it can also be a disease of the soul; long-term suffering impacts the quality of the lives of the people who have it and those of us who care for them. Those lives can have a different outlook with research, education, and awareness.
On April 28, 2012, in the heart of Asheville, North Carolina, prayers were answered. Our e-crew, NEA, and people from all over the United States walked on the University of North Carolina–Asheville campus to raise funds and awareness for eczema. Paige cut the ribbon to begin the walk, and behind her were children and adults who walked for a cause that had never been walked for before. We brought this disease into the light, and celebrated the progress we made just by putting one foot in front of the other.
I am a twin of a beautiful sister with eczema. I am the mother of a precious girl with eczema. And I participated in the most important walk of my life— Itching for a Cure.