Rebecca Cross Bodan, PhD, FNP, Nu’97
For years I practiced just that: caring for vulnerable humans in their greatest hour of need, and eventually I moved into academia. I always knew I had picked the right career; I knew I was making a difference. But it was not until the birth of my daughter that I really truly appreciated how and why I was supposed to become a nurse.
My daughter was born with skin missing from her hands, feet, and legs. We quickly learned that this was due to her being born with a rare genetic disease, epidermolysis bullosa (EB). What we didn’t know in those first moments was how little the health care community knew about EB, and how much pain and heartache would be involved.
My daughter is now 6. She suffers in more ways than even I understand, but she is a warrior, thriving and living her best life. And in the meantime, I have found my voice. Given the rarity of my daughter’s condition, the immense impact it has on one’s quality and quantity of life, and the fact that I am probably the only nursing faculty member who has a child with EB in the United States, I write. I write about what I see at home, and what I hear from the larger EB community. Sometimes that writing involves published manuscripts and working with large interdisciplinary teams of EB experts, and sometimes it leads to social media.
But whenever and wherever I write about EB, I have one goal in mind: to bring attention to this rare disease. Because with attention and awareness comes funding, and with funding comes research, which is so desperately needed for the EB community. And in those moments, when I am writing to share our story, and the story of so many EB warriors, I do so knowing that it was my nursing education at Penn that helped me to become who I am professionally, that gave me the tools to tell my story and reach a larger audience. And for that I will forever be grateful.
To submit your own story, visit: www.nursing.upenn.edu/humans.