My name is Monica Foley Fleegel, and I come from a family of 10 kids. Five of us have lived with Erythropoietic Protoporphyria our whole lives. Growing up in a family where five out of 10 kids could never go in the sun was a difficult thing. Having the disease was hard on all of us, including the siblings without EPP, because all the plans were made around those of us with EPP. However, it shaped us into the adults we are today.
We all chose careers that would allow the least amount of time in the sun and we all have hobbies and activities centered around being indoors. We are now all in our late-40s to mid-60s and have figured out how to live our lives out of the sun. But as we age, have children and now grandchildren, it is difficult to not join in with their activities. I know we all still take risks and then suffer the pain of an EPP reaction, and the experience usually doesn't seem worth the pain in the end!
Having a disease like EPP is much more than a minor inconvenience. I dream about the day I might be able to walk to my car after work without pain or go with my daughter to the amusement parks she loves so much and not have to watch her day on videotape!