“I know what’s wrong with you.”

Those are the six little words that I had been longing to hear for my entire life. Growing up dealing with an unknown issue wasn’t easy. I’d put sneakers on and my feet would blister. I’d put sandals on and my feet would blister. It truly didn’t matter what type of shoes I wore, I would break out. My mom said the blisters started when I was a baby, from the very first time she put shoes on me. I didn’t even walk yet and here I was breaking out.

Every day was a new experience. Some days were easy, some harder. I know it wasn’t just hard on me, but my whole family. Family activities were challenging. Going to theme parks, fairs, anything that required me to walk for any real length of time always ended in pain and annoyance. My parents started renting wheelchairs wherever we would go to try to combat this issue and no one understood why it was happening. We also learned that my hands blistered too, but it was rare because I wasn’t constantly holding something on my hands like you do with your feet.

Doctor’s visits, they were useless. They didn’t understand why my feet blistered the way they did. They suggested abuse, rather than actually getting to the bottom of what was happening to me.

“Are you letting her run around barefoot on hot pavement?” “Are you burning her feet?”

So in the end, we stopped asking. They didn’t know, they didn’t understand. No one did. We figured it was just something we would have to deal with for the rest of my life. If the doctor’s didn’t know what was wrong with me, then how were we supposed to ever figure it out.

I wanted so badly to run and play like the other kids, like my brothers. So, I would and I’d blister and my mom would pop them, soak my feet, bandage them and start all over again the next day. I wasn’t going to let this define me. I couldn’t…but, there are times I wouldn’t have a choice. There are some days I could barely walk due to the blisters covering my feet. Some days I actually couldn’t walk and would have to crawl places, like the bathroom.

I had seen several dermatologists over my adult years in hopes that enough time had passed that someone may know something. The first one I seen, thought that it could be Hyperhidrosis which means having too many sweat glands. He said I had that and maybe that was causing the blistering. I did sweat a lot, so I figured it was a good answer. Hyperhidrosis causing blisters was rare, but it seemed logical. He started me on a bunch of different creams to combat the sweating, but the blisters still came. Next, we tried steroid shots. That was super painful let me tell you! I had it done once and I hoped and prayed that it would work. The blisters still came. I gave up.

About a year later, I helped out during my daughter’s Color Run at her school. My feet and my hands both blisters so bad. I struggled to walk for two weeks! My previous dermatologist was gone by this point, so I requested to see a new one. I had to wait a week or two, but at this point what did that matter?

When it finally came time for my appointment, I sat in her office and showed her my blistered feet and my blistered hands. She looked them over very carefully and said “I know what’s wrong with you.”

I have EB. Epidermolysis Bullosa. It’s a condition that makes skin fragile. Fragile like a Butterfly’s Wing. It is rare. (1:17,000). It is genetic. It can happen to anyone. It is NOT contagious and it has NO cure.

I am what you call a spontaneous mutation. Neither of my parents have EB. No one else in my family had EB and yet, here I am. I was finally diagnosed in May of 2016. I was 29 years old.

Now, I’m almost 32 living my life the best that I can. I’m married to my wonderful husband of almost 10 years. We have two beautiful children. A daughter, who is 8 and unfortunately was diagnosed with EB as well. (Thankfully, it’s ONLY on her hands.) A son, who is almost 4, and so far shows absolutely no signs of it. We don’t let my condition stop us; we don’t let my condition define us. We have our good days, and we have our bad days, but I know what’s wrong with me and I do my best to not let it stop me.