My name is Anna, I'm 20 years old and I have EB Simplex/Dowling Meara. With my disorder, I encountered much more blistering and tearing when I was a little girl. However, as I grew older it became less serious, with fewer blisters until they became scattered or barely any at all. Having the severity of my EB fall at a young age has impacted my perspective on aspects of my life that I still carry with me today.
Knowing that my peers and those around me could easily notice my disorder contributed to my shy nature. I took questions from others as judgemental and confrontational, even though that was not the case for many, and always feared having to answer because it meant that I had to face my differences. This could be said for many children, but it was difficult for me to recognize that everyone is unique and has their own differences. However, I began to form close bonds with friends and see what made them their own person, which taught me to not invest all of my self worth on my physical appearance but to dedicate myself to the person I want to be. Along with my family's encouragement, I was able to believe that my EB is not a barrier that restricts me from pursuing my interests, overcoming insecurities, or meeting new people.
Today I am a Junior at Florida State University majoring in Communication Science & Disorders to become a Speech Language Pathologist. I want to focus on working with children in my future, as I am inspired to help them navigate their own disorders, and to hopefully instill within them a sense of confidence and passion that they can strive towards whatever goals they want to achieve without anything holding them back.
Although the severity of my EB is not what it once was, I am still learning how to navigate a world with my disorder. Being able to advocate for myself and speak up when I am experiencing any sort of pain is the most important step in taking care of myself, such as requesting a ride to class from the disabilities center when my feet are too blistered, or making sure I sit down at work if I am feeling uncomfortable. I continue to encourage others to never see their disability as a burden, and to always value self care to ensure mental and physical well being.
I admire the people with EB who strive to do what they want and not let anything stop them. I admire that strength in their spirit. I am thankful for my parents' love and care that they gave me when I was in pain, and I am grateful to doctors who continue their research and devotion to find a cure. There is a contagious ambition and strong mindedness in the EB community that everyone looks towards for hope and inspiration, and that is the beauty of the butterfly children.