My name is Hayley Winder, I am 23 years old, and I was born with RDEB. Epidermolysis Bullosa (EB) has always made life a little more challenging, but I never let it stop me from enjoying it.
I don’t remember much of my childhood with EB. In high school, I really found out who I was. Freshman year, I joined the Air Force JROTC program at my high school. It came with its own challenges, but my Sergeant was great at accommodating my needs. On days we had to wear the Air Force uniform, I was allowed to change into my uniform 10 minutes before inspection because it would rub, and the shoes we had to wear would cause blisters. So, I would change into my uniform 10 minutes before inspection and then I would change back into my regular clothes after inspection was done. I was very involved in the ROTC program. By my senior year, I was the vice commander of my unit. In June of 2019, I graduated high school and in August of 2019, I attended beauty school and got my certification in freelance makeup. In December of 2019, I found out that I was pregnant, and in August of 2020, I delivered a healthy baby boy. 
Some challenges I face with EB are bandage changes, and being the best mom I can to my son. Bandage changes can take up to 3-4 hours and I do them on my own so it’s a very tiring process. EB is a very unpredictable condition. I don’t know what each day holds. Some days are better than others and trying to be the best parent I can be for my son sometimes looks different some days, depending on how much I am able to do that day.
One thing I wish people would understand about EB is just because we have EB doesn’t make us any less of a person. Some of us are more severe than others, some of us have lost our ability to walk, but that doesn’t mean we aren’t capable of doing the things we love. It might take us a little bit longer and we may have to find ways to adapt ourselves to be able to do certain things. But we are still very much human, and we want to be able to live our lives as normally as possible.
debra of America has shown me that I have a community. Before we learned about debra and went to the first DCC conference in Nashville, I had never met another person with EB before. I can always reach out to my community for support and advice.
In the 23 years of my life, I have cried over and over again because EB can be so difficult and challenging, but one quote that I live by is “From every wound there is a scar, and every scar tells a story. A story that says, I survived!”- anonymous.
Join Hayley at the 2024 debra Care Conference in Atlanta, GA
If you are living with EB and seeking support, learn how debra can help
