Join the EB Resource Conversation

Since we launched our EB Resource Facebook page over a year and a half ago, it’s been gratifying to watch this community of EB patients, families, caregivers, and supporters take shape and evolve. Any online community requires time to grow, and we’ve been so appreciative of the more than 860 members who follow our regular updates, some frequently contributing by offering feedback about recent blogs, commenting on member posts and sharing personal stories and experiences to educate and support others.

If you haven’t been an active part of the community but merely an observer, we encourage you to take part. It can be a great way to learn from others and connect with people who may share similar questions, concerns, and circumstances. Some members may meet up in our community for the first time and develop relationships further off the page – through emails, phone calls and or even meet-ups later. Online forums like ours and growing communities such as EB Friends are a way for those living with EB to realize they are far from alone and that there’s a substantial network of people available for support.

Here are just a few things overheard in the EB Resource community in the past few months. If you are not already a member of this diverse group, we encourage you to join in the dialogue.

** Please note that comments and recommendations offered by individual members of the EB Resource Facebook community 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 blogged about this year’s EB Patient Awareness Week and encouraged families to begin planning any fundraising activities now. When we inquired about events, we already learned about two later this year. Jamie Grossman Silver shared info about a NYC event, Doubles at the Sherry taking place Oct. 26 (www.jgsf.org) and Laurie Sterner gave us a heads-up about a Sonoma, Cal. event planned for Dec. 3, the Third Annual Butterfly Ball (www.sonomabutterflyball.com).
  • We surveyed parents in the community about SoftSouls, a new brand of soft-soled shoes for babies that we had just discovered and received feedback from a handful of parents who had tried similar shoes for their children. Stuart Kelly Holdings said that his family had used Tru Blue and that they were “brilliant” but required extra care around the ankles because of the elastic. ‘Teri Bienvenu and Elizabeth Spolec Schwartz had both tried Robeez for their babies, Schwartz noting that these “were the only shoes they could wear when their feet were bandaged.”
  • In April, we asked parents of children with EB a tough question – have you been able to employ a babysitter from time to time and for those who did, how they prepared for it. Logan England said that the family simply couldn’t use a babysitter who would have to help with so much for their daughter, including administering meds and doing wound care. Angelique Ringgold noted that she and her husband had tried part-time, in-home day care for their daughter Bella, which involved him going to the location beforehand to survey and “EB Proof” everything, purchasing necessary fabrics and padding, doing a two-day training with the caregivers and providing written instructions. She said, “We agreed to a two-week trial so no one would feel pressured to continue if either party was uncomfortable. It worked out very well. They were so careful.”

  • We wrote in late March about ways families could share their own story through blogging and offered five important pieces of information for them to know before launching a blog. Trisha Knuth pointed out that many parents start out blogging for more personal reasons than raising EB awareness but that it can often lead to that goal, as well. She said, “Many of the blogs were begun as a coping method or a way to communicate with family and loved ones. If they turn it into more than that, usually it’s because the people following them appreciate what they have to say.”
  • Earlier in the year, we shared info about a Prayer Group web page that one EB family had established for their son Jonah. One of our community members Emily Renfrow Guthrie shared how important prayer was for her family and son Jack, who would have turned 18 in April. She urged others, “Please take the time and pray for those affected with the disease and for the families that care for them. They need all that you can give.”

Sources:

EB Resource on Facebook

EB Friends

Plan Now for EB Patient Awareness Week 2011, EB Resource

Blogging Your Story: Five Things You should Know, EB Resource

Related Posts:

Social Media for EB Storytelling

The Importance of Connecting

Learning from Each Other Part I

Learning from Each Other Part II


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