Your EB Story


What is it that draws us to want to know more about other people we may meet along the way? Often there is a common interest or bond of some kind. Within the EB community, many parents have taken an otherwise trying facet of their lives and found a way to not only inspire and educate others, but help build a support network. This has been done by simply sharing their story, whether it is by hosting an event in their community and introducing neighbors to what living with EB is all about or proactively reaching out to local media to share their story with a larger audience.


It can be a tough decision on how much we want to share as a family. In my various roles interacting with the EB community, I always strive to be an advocate for families and a supporter in whatever way I can help best, such as directing someone to a resource that I think might be especially helpful to a family. But my role as a mom and as a parent who has lost a child to the devastating disease only motivates me more to reach as many families as I can every day and educate others about EB who cross my path.


Before you decide how you can best tell your family’s EB story, you must determine just how much you are willing to open your family’s life to the outside world. As you often see on the EB Resource Twitter and Facebook feeds, several families have shared with local TV affiliates and newspapers about their family, and that includes allowing those media outlets to capture visually a candid view of the disease and what caregiving is entailed for a person with EB. If you agree to tell your story this way, you must be prepared for the possibility of additional attention after the story runs. Some families instead choose to tell their story their own way through blogs, books, photo galleries or YouTube videos. If you want to be an active part of the EB community and support and educate others, then do not lose sight that you are ultimately the final decision-maker on what is the best way to do this that will be the least disruptive to your family.


Whatever your personal circumstances may be or your view on what your role could be within the EB community, I encourage you to take the time to contemplate what more you can do to take the experience of living with EB and translate it for others. The wisdom and support you may lend to another family who have only begun to learn about the disease and what this diagnosis will mean can be invaluable. The impact you can have on bringing greater awareness to a relatively unknown subject like EB is immeasurable.


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