A Little Birdie Told Us

We always learn so much from the members of the EB Resource Facebook community. Recently, we listened in to hear what folks were saying and wanted to share some highlights. And if you haven’t had an opportunity to visit lately, we invite you to do so. It’s a strong, smart and caring group of people who only want to help educate and support one another. We hope you’ll stop in and say hello.

** Please note that comments and recommendations are offered by individual members of the EB Resource Facebook community and are not necessarily recommended or endorsed by EB Resource. Individuals should always consult a physician before making any changes to their wound care program or other care regimens.

  • Recently, we encouraged members of the community to reach out to us if they would like to tell their own EB story. We found out that one member Derra Nicole Sabo had already taken a very big step to do just that. “I have written a book with my family about what it’s like living with EB. It’s called EB…Some Call It Epidermolysis Bullosa, I Call It Extraordinarily Beautiful,” she writes. Thanks for sharing, Derra!
  • In April, we asked members what they felt was the most misunderstood thing about living with EB and received a lot of feedback. A few members especially chimed in agreement with member Elizabeth Schwartz. “It’s no big deal, they’ll grow out of it, a change in diet would help or a new lotion. I mostly hate when people, especially family, don’t acknowledge the difficulty or special needs my kids have,” she says. Jessica Tilldal agrees and notes, “People try to be nice by saying ‘hopefully it’ll get better when she grows up’ when in fact it might be quite the opposite…frustrating!” How would you answer that question? Feel free to share your own thoughts.
  • We also wanted to pass along to others some recommendations for EB-friendly clothing brands worth a peek online or in person, and as usual, the community didn’t disappoint with helpful suggestions. Jamie Grossman Silver shared that she had made a recent find: “I just discovered a brand called City Threads. Incredibly soft and seams are very gentle.” Josie Tripp offered her own suggestion – “Carters and kicky pants” – and Teri Bienvenu noted some places that have worked for her family: “Gap and Old Navy fleece have always worked for us. Target and A Children’s Place have tag-free cotton shirts and we do crocs for shoes.” Kathryn Foster recommended “New Balance Shoes. They come in extra wide widths to accommodate bandages” as well as Hanes tag-less boxer briefs. If you missed our original question posed, do you have any suggestions to offer?
  • So many of you told us how much you enjoyed the recent Q&A with the charming Stevie Hislop in a two-part blog as she shared honest and open insight as a young adult living with EB. We’re happy to share that we’ll be featuring another wonderful Q&A with a pivotal person in the community who’s done much to support our families, so look for that next week. And when we did reach out and ask you for suggestions of future people to profile, you shared your suggestions and we took notice and hope to feature more EB advocates and supporters in future blogs. So stay tuned for next week and in the months to come.
  • We also welcome it when members want to share news about an upcoming campaign or fundraiser. For example, in April, Jeanne Appleton announced to our community that the Scott Ward Schofield Memorial Fund was holding a Facebook Awareness Day online event for the charity on May 18. Similarly, Amy Tunmire Wehr shared news of an online fundraiser for Save Jax that ran April 4-27 to benefit young Jackson Baldwin of Youngstown, NY. We like to think of our community as a powerful, loving circle of friends, and what do you do in the company of friends? You share, you encourage and you support. If you have an announcement about an upcoming event that all of us in the EB Resource community can get behind and spread the word about in our own circles, please let us know on Facebook or email me directly at leslie.rader@hollisterwoundcare.com.