Learning from Each Other, Part 1

One of the first things a family learns after being faced with an EB diagnosis is that ours is a community that is giving and forthright – with information, with product suggestions, with extra supplies, with support. The EB community in general, including our own EB Resource forum, will do whatever’s necessary to help out a fellow family, and I speak from personal experience.

So much can be learned from the experiences of others, so we thought we’d take the last few weeks of the year to pull together some information that members of our EB Resource Facebook community have shared with us.

We always love hearing from you – in comments on the blogs, Facebook updates or Tweets and re-Tweets. So let’s remind ourselves some of what we’ve learned from each other this past year and renew our commitment to share with each other to provide greater clarity and comfort to fellow EB patients and their families.

** 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.

  • When the year started, we were curious to know when our new EB Resource friends had met other EB patients and families along their journey and what impact the experience had on them personally. Maggie Cervera-Escobar said it wasn’t until she took part in a city-wide event, the Have a Heart for EB event in Orlando. “I loved it and I knew we were not alone!” she said. Misty Tanksley noted that she met her first fellow EB patient about 20 years ago and after she became an adult, she followed up with him and continued to meet many more new patients and families through the Patient Care Conference held by DebRA. Alma Monroe wrote that she was in Santa Rosa Hospital for a doctor’s appointment for her son. “Out of nowhere a woman approached us asking if our son had EB, and we said ‘yes’ and she said ‘me, too.’ We were overwhelmed to meet someone with not only EB but with Recessive Dystrophic EB (RDEB). She gave us hope for our son,” she said. Amy Stiller Bailey mentioned an experience when her daughter was twelve weeks old and taking part in a clinical trial. The experience opened her eyes to the road that lay ahead. “I learned a lot from those people, about hand wrapping and such, which was very valuable. . . . Also, at a very early age, talked with a mother in Owensboro, KY. She had twin boys at the time who were in their teens. She asked me if I wanted the sugar-coated version or the real one, I opted for the real one which has panned out to be very true,” she recollected.
  • In February, we wondered where our community members were having the most success locating EB-friendly clothing, and some people were quick to tell us. Connie Danell Yates said Old Navy and Children’s Place have been helpful. She and Frank McNamara also indicated some shopping victories at Target. Nell Lox Valentine liked Carters, and Julieann Morabito suggested the 100% organic cotton Hanna Anderson clothing. “Super soft, durable, feels like ‘butter’ and their sizing is very generous, so there will be some give to alleviate the tightness around thick dressings,” she noted. Sally Munnoch also liked what she’d seen with the Anderson line and noted that one of the biggest pluses of the pajamas was that it used flatlock, seams which didn’t seem to bother her son (these tend to be less scratchy, something helpful for sensitive skin).
  • In the spring, we wanted to know how our EB Resource Facebook friends were raising EB awareness in their own communities. Lydia Judd started her own cause page on Facebook. Denise DeRobertis Mordente threw a benefit in tribute to an EB patient. Hollye Young Wagner has tried Basket Bingo and bake sales to reach out to neighbors. Pam Charney created her own video about her daughter’s EB, which she shares with caregivers, teachers and other parents interested in learning about EB. (Kudos to all of you for every different way you help spread the word about EB – what it is and what resources are needed to find a cure!) Dianna Crowley Adams tells her friends about her granddaughter, which leads to conversation about EB, and she talks to health professionals she meets to ask them if they’ve ever heard of EB. Linda Ainsworth wears her DebRA bracelet, and people ask about that, along with her butterfly tattoo with her late daughter’s name, giving her an opportunity to educate others about EB.

Next week, we’ll highlight some of the helpful coping strategies and pain management information our community members have talked about this year.


EB Resource Facebook Community Page

Related Posts:

Thankful for These EB Voices

A Q&A with DebRA’s Nurse Educator

Fast Facts about EB

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