Mommy Bloggers and the EB Community

Mommy blogger communities have emerged across various parts of the country as a powerful voice and growing sphere of influence, as consumers, as parents and as citizens and neighbors. But in the EB community, these bloggers seem to have truly embraced a very significant role to play: as members of an intricate support system and knowledge base.

For the past several years, I’ve watched the EB community grow as more and more families have become actively involved in raising awareness and research dollars. That has also included witnessing the EB voice of only a handful of parents of children with EB, grow into a much louder one comprised primarily of mothers looking out for not only their children but other families within the community, as well. And even when some of these voices have been momentarily silenced after the deeply personal and devastating loss of a child, many of them have promptly returned to the blogging community to continue speaking out for the community through their blog.

In other blogger communities, moms often focus on finding better solutions – maybe it’s more affordable baby supplies, a better-made garment or a suggestion for a pediatrician, local hair stylist or family-friendly neighborhood restaurant. If you scan some of the more active EB mommy blogs, you’ll see it’s not much different, but perhaps the focus is on wound care supplies, EB-friendly clothing sources and suggestions for flexible locales to take out the whole family and ensure a fun, safe visit for all.

There are so many wonderful mommy bloggers in the EB community, we couldn’t possibly have a favorite but we’ve been touched by the different ways these wonderful moms have transformed into great communicators and leaders, from Patrice Williams to Sara Denslaw to Courtney Tripp Roth, just to name a few.

For those of you that follow specific mommy blogs in the EB community, who have you chosen to follow regularly and why? What was it about their specific blogs that compelled you to return or even interact with the mother behind the blog? And for any of our EB mommy bloggers who may be reading this, we’d love to hear from you, too. Why do you make such a commitment of time and energy to be a participating mommy blogger in the EB community? What do you feel you get back in return for that investment?

To all of the bloggers out there – moms, dads, those diagnosed with EB themselves who wish to share more about their experience, educate or connect with others, I just want to say thank you for all you do to help define EB to the world and bring more attention to its deep impact.

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