Special Guest Jennifer (Lyric) Bolles talks about Life with EB

Butterfly Talk

About Jennifer in her own words: My name is Jennifer (Lyric) Bolles. I was born in FL and have lived in many different states throughout my life. Currently, and indefinitely, I am in Cincinnati, OH. I moved here almost 6 years ago for the EB drs at Cincinnati Children's Hospital and Medical Center's (CCHMC) EB center. My health was drastically suffering as a result of the arrogant, ignorant FL drs who refused to learn about EB I am 42 yrs old and have Recessive Dystrophic Epidermolysis Bullosa. My subtype of RDEB is Inversa, an extremely rare subtype of RDEB. I am externally affected by this subtype of RDEB but my chronic areas are mostly where skin rubs/meets skin. I am more affected internally (oral, esophageal, GI etc...). As a child/young adult, I was active in choral groups, ballet, gymnastics and track but not without injuries. I kept trying and pushing myself until my 2nd year of track in high school. Ultimately, I did quit track as a result of falls that caused severe damage all over my body which took weeks to heal each time. It's one of the rare times in my life that I was truly emotionally devastated by having EB. I began working after high school in retail, food service, clerical positions and found my way to my true love, working with children, specifically special need children, typically ADD/ADHD, mental, emotional, behavioral issues, victims of abuse and neurological issues. I've been working in Child Development for almost 20 years. I am only able to work part time as a result of EB and Fibromyalgia so I typically work with private families who need PT or occasional care.