I was diagnosed with EB shortly after I was born. After my parents got over the fact that I was born with a full head of hair unlike my sisters, it was apparent that something else was different about me in that I was born with blisters! Ironically, the hospital’s dermatologist was away on vacation for the first few days of my life, so I spent them in the NICU because no one was quite sure what was going on with me. It wasn’t until doctors took a biopsy of my skin for testing and the results came back indicating that I had EB.
As a kid, going to a small private school there wasn’t a lot of diversity amongst my classmates so to have me in class was to put it in the nicest way possible, a bit “alarming” for my peers as well as my teachers. All throughout elementary, middle, and high school, I was bullied for having blisters, wearing bandages, and the occasional eye patch when I got a corneal abrasion and thankfully, I have 2 sisters who had no problem sending any bully running in the opposite direction. Somehow, I found a great group of friends who loved me despite my differences. By learning to accept myself I filled my life with people who love and accept me.
As an adult, the most frequent challenge I face is keeping up with the people around me. I get frustrated when my body can’t go as fast as I want it to especially when I’m out traveling the world and trying to do all the things the non-EB folks in my life are doing (did I mention that I went sky diving, SCUBA diving, and flew in a helicopter all in 48 hours during my trip to Australia?). Having blisters all over slows me down quite a lot, but it never stops me!
But I will say the greatest challenge I’ve faced as someone with EB has been being discriminated against because of my condition. I have been denied opportunities and looked down upon because others couldn’t see past me having EB. Somehow though, being told “no” so many times in my life has empowered me to say “YES!” to all my dreams and aspirations because I know that despite what others think, there is nothing that can stop me.
I love to make lists. I am constantly making lists in my head: all the things I need to do; what groceries I need to get; all the places I want to travel to. When I’m feeling my lowest, I still make lists, but these lists are of all the things I’ve accomplished, all the things I’m grateful for, and all the people who love me. At the top of these lists always seems to be my Mom because she’s always given me the encouragement I need or the push to get back up and keep trying when life knocks me down.
A big part of the reason I chose to become an occupational therapist was because of my experiences of having EB: thinking that my life would be limited, struggling to do the things my peers did so easily, and hating being told “no you can’t do it!” My passion for helping others and determination to give other people the freedom to say, “YES I CAN!” has always motivated me to give my best to my students every day. Having EB can make it a challenge to keep up with some of my more active kiddos, especially when their goal is to “learn how to throw a football” and I have 0 athletic ability but that may be more due to my poor hand eye coordination than having EB, but I always do my very best to help my students achieve their goals. I love my job very much, and although EB doesn’t make my job any easier, it certainly has made my approach to therapy more compassionate, creative, and encouraging.
I see myself as someone who is incredibly blessed giving me a desire to give back not only through my career as a pediatric occupational therapist but also as a volunteer. In college, I regularly volunteered in the local community (I went to the University of Scranton for undergrad and grad school) and participated in numerous service trips throughout the US. During the summer, I volunteer with the American Academy of Dermatology’s Camp Discovery program! I’ve made some great friends over the years who I still keep in touch with today from all over the country. I love supporting the campers as they make connections with others living with various skin conditions and being able to serve as a role model for them.
When I’m not being, as my students call me, “Miss Sarah,” my favorite thing to do is travel. I frequently am reading about different places in the world I want to visit or reminiscing about the amazing memories I’ve made on my many adventures. Hopefully, my next trip will be to the Lofoten Islands in Norway to catch the Midnight Sun, explore the Fjords, and visit a Sled Dog farm! The pandemic has made it hard for me to do my favorite thing, but it has given me lots of time to play Animal Crossing on my Nintendo Switch and watch The Great British Baking Show, bake things they’ve prepared on The Great British Baking Show, and eat things that I have made after watching The Great British Baking Show. (Did I mention I really like The Great British Baking Show?)
My biggest dream from the time I was a kid was to travel the world and the place I wanted to visit most was Australia! I finally got to go during the summer of 2019. While I was there a few things I did included: going all over Sydney, holding a koala, a snake, and even a dingo, skydiving, and visiting the Great Barrier Reef. I even took a quick stop in New Zealand to visit Auckland, Hobbiton, and Waiheke Island!
In the immediate future, I want to go on more adventures, aside from Norway, I have dreams of going on Safari, visiting Japan, and exploring more of the Pacific Islands. Career wise, I plan to continue working as an occupational therapist and helping as many kids and their families as I can. Long-term, my greatest hope is to get married and have a family of my own one day. I hope to have kids biologically as well as through adoption. My significant other and I both have EB, and if we have children in the future one day, we both know and are open to the possibility of our children having EB as well whether they be ours biologically or through adoption. Till the world opens up again or I get hitched, my immediate goal includes teaching my Kindergarteners how to write all their letters, perfecting my island in Animal Crossing, and making an impeccable Genoise sponge cake.
The best piece of advice I’ve ever been given was given to me while on a service trip working with men affected by homelessness, addiction, and poverty in Washington DC. One gentleman shared his story with me of overcoming the obstacles in his life and how he now helps others in the same situation he was. He ended his story by telling me this, “your wounds can help heal the wounds of others.” And no truer piece of wisdom has ever been shared with me than that other than when I came to learn for myself that just as my wounds can heal those of others, their wounds could help heal my own.
debra has been a part of my life for as long as I could remember. My parents went to debra any time they had a question about EB, and I’ve gone to debra for everything from a referral to an adult dermatologist to asking a past EB Nurse Educator if I could interview her for one of my college assignments!
- Sarah Morrill
