Epidermolysis Bullosa is a group of hereditary skin conditions whose hallmark is blistering of the skin in response to heat, friction, injury or rubbing. There are four types of EB and we have the most mild form, Epidermolysis Bullosa Simplex. The faulty genes that cause EB Simplex are the ones that produce keratin, a fibrous protein which is supposed to make the outer layer of skin (the epidermis) tough and resilient. Mutations in our genes prevent the keratin proteins from binding together, causing cells in our epidermis to become extremely fragile and easily damaged. As a result, our skin is less resistant to friction and minor trauma and blisters easily.
So what does this mean? Well, it means a lot of things.
#1. Our blisters are not like your blisters. They will continue to grow unless we make a small hole in them and let the water drain. This process itself is painful. Blisters usually heal within several days and are generally painful throughout the healing process.
#2. EB mainly affects our feet but we can get blisters anywhere. The usual culprit is physical activity. Running, walking, even standing still for a long period of time will cause blisters. On a hot day, I can get blisters on my hands from pushing a shopping cart through the Harris Teeter or blisters on my neck from where a necklace rubbed. The adhesive on a bandaid can cause its own blisters. Scratching a mosquito bite will cause blisters. Pretty much anything causes blisters.
#3. It’s a helluva lot worse in the summer. Duh. In the winter, we can do so much more. We can run around the playground and take bike rides around the neighborhood. It’s not perfect, but it’s a lot better.
#4. There is no magical pair of shoes. Some shoes are better than others (for example, you will not find a pair of heels in my closet) but any shoes, worn long enough will cause blisters. Me, I’m a ballet flats girl. But not just any flats. The sides have to be so soft, you can completely collapse them with one finger. My boys love Crocs. I don’t get it. All that rubber just screams blisters to me, but for some reason, they do well on the boys.
#5. What can you do that we can’t? Run, jump, exercise, ride horses, ice skate, play sports (except for swimming), wear any kind of hard shoe (ice skates, high heels, athletic shoes for example), walk long distances (which in the summer can be as little as 1 block), go to amusement parks, take bike rides in the summer, stand at a kitchen sink doing dishes for an hour, walk across hot sand on a beach, join the military…I could go on and on but I think you get it.
I’m not going to sugar coat it. It sucks. It is always hard to be different than everyone else. Growing up, I couldn’t play soccer or field hockey like my friends. I couldn’t go to Busch Gardens when someone invited me. I cried when I cut particularly painful blisters. I missed days of school because my feet were so bad I literally could not put on a pair of shoes. I couldn’t do a lot of things that other people could do. And when you are young, it is excruciating to be outside looking in. You learn to handle it better with age. You learn how to say no. You learn that the disappointment will fade. But there were still plenty of days and nights when I pushed myself well beyond my limits because I didn’t want to say no. And so there were mornings when I would wake up and have so many blisters that I had to crawl on my hands and knees just to get to the bathroom.
One of the toughest parts of EB is that it is a largely “invisible” disease. I remember vividly being at a Whole Foods in Arlington when I was 22. It was a hot day and my feet were sore and the only available parking was in a satellite lot across the street. For most people, that’s no big deal. But for me, on that day, it was. So I used my temporary handicap tag. The one I keep in my car and try never to use because I hate the looks I get from people when I do. On this day, I didn’t have a choice. As I was loading my groceries into my car, a man on a bicycle stopped beside me and started berating me for using a handicap tag under false pretenses. He was condescending, arrogant, and vitriolic. I found myself desperately trying to explain my condition with tears streaming down my face. He could not be bothered to listen because, to him, I was a perfectly healthy and active 22 year old girl. I didn’t have crutches. I wasn’t in a wheelchair. I wasn’t toting around an oxygen tank. I have an invisible disease that no one has ever heard of.
Lest you think we sit around and cry all the time, let me tell you about the upside. Because I could never just blindly follow the crowd, I had to learn how to be independent at a very early age. I had to learn to be comfortable with being different, with being myself. And although it was painful, it made me stronger. It made me confident. It made me empathetic. It made me less likely to judge others by their appearances. It made me appreciate the friends who would hang back and sit on the sidelines with me instead of running onto the playground and the ones who bowed out of the group trip to the amusement park and suggested we go to the movies instead. It made me appreciate the teachers who give Jack and Will piggyback rides when their feet were sore. It made me appreciate the colleagues who suggested we go to the crappy bar in our office lobby for happy hour instead of the cool one 4 blocks away because they knew I couldn’t walk that far. It made me appreciate what it means to care about someone more than yourself. It made me who I am.
And that’s not such a bad deal after all.
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