Building Your Own EB Team

When we find ourselves facing a challenge, it can feel so much easier to conquer when we surround ourselves with others to support and strengthen. As EB families, this is no different. Epidermolysis bullosa is a complex, devastating and painfully exhausting disease for everyone involved — from patient and caregiver to directly connected family and friends who are in the care circle.



We frequently blog about the different support resources available that can help us when we feel defeated or struggle with overcoming a specific obstacle. Anytime we reach outside of ourselves we work toward building a stronger more diversified set of skills and attributes in our network, or as I like to think of it, our own team.


Here in November – in the heart of college football and pro football seasons and having just finished watching two hard-working teams go at it in the World Series for the major league baseball championship – the concept of teams is familiar to most of us who have taken part in some type of team along the way. Maybe we had a key role on a sports team in school or a specific responsibility on a work team for a project. We know firsthand how critical one player can be to an entire team’s success. Without that person’s contribution, the team’s primary goal can be nearly insurmountable. But gather all of the right talents and place them in the appropriate roles and you have a formula for victory.


So who do you have on your EB team? I hope if your family has worked closely with debra throughout the initial gathering of information following diagnosis that you consider me as the organization’s New Family Advocate and debra’s EB Nurse Educator staff as part of your team. What about in your own family and community? Are there particular relatives or other moms in the neighborhood who you have come to rely on for empathy, advice and occasional babysitting support?


Consider any source of emotional support a key partner for you and your family, such as a family priest or spiritual advisor; a counselor or therapist; and any parental support groups. Of course, your collective medical team from your primary physician to any specialists with whom you have worked to address medical or dental issues that may arise, all of these valuable care professionals are a part of your EB family’s team.


As with any team, its success depends on communication. It is important for you to keep others abreast of any new changes – for example, if a new medication is being introduced (or eliminated), anyone who may engage with your family member with EB in a caregiver role needs to be aware of such changes. As you grow your EB family’s team over time, keep in mind that their success in helping you depends on how open you are to receiving their help but also keeping everyone on the same page when it comes to the latest information about you and your family.

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