Learning from Each Other, Part 2

Last week, we began looking back at this year and all of the valuable information and personal stories that members in the EB Resource community have shared with one another. This week, we recap some of the feedback we received when we asked EB patients and families on Facebook about coping strategies and approaches to pain management.

** 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.

  • This summer, we asked adults with EB to share any childhood coping strategies they might have used to deal with other people’s reactions to their skin condition. Several people were very candid about their own childhood experiences. Monica Dillon noted that she always told herself that she had EB for a reason, that no one else in her family had it and that “I always thought God gave it to me because I was the one who was strong enough to handle it.” Misty Tanksley tried using long sleeves as a means to hide blisters and concealed her hands whenever possible but said that life got much easier after school. To minimize any uncomfortable situations for her own children with EB, she made the decision to homeschool her kids and noted, “Their friends are all raised by good people who understand and celebrate a child’s differences. My children are already leaps and bounds ahead of where I was mentally at their age.” Pam Charney especially found the question relevant that week as her little girl who had been at camp had just returned with the news that nobody except the counselor would trade Silly Bands with her because ‘her boo boos have germs’ but noted, “I just hope that surrounding her with love and support will make her strong enough to ignore any nasty comments.”
  • In September, with school starting for many and leading to questions and queries about the new classmate’s condition from students and teachers, we asked patients and families what were some of the most frequently asked questions posed to them regularly. Mae Pledger Summerville said that for her adult son’s whole life he’s been asked nearly every day ‘What happened to you?’ Bob-Mary Templeton noted one frequently-asked question that would upset her child was “Is that contagious?” Wendy Dittman said while the questions haven’t always been the same, she’s always had her response planned and ready to deliver. “I try to respond in a thoughtful, kind manner when explaining EB, even when I feel annoyed by the comments or questions – sometimes tough. I want them to see my daughter’s beauty as a whole person and I feel the best way to achieve this is to kindly inform others…then I try to resume the conversation by pointing out the things that my daughter CAN and loves to do! EB does not define her!” she says.
  • In October, we asked EB patients and their caregivers what have been the most effective pain management methods. EB patients Julieann Morabito and Dawn Hinterberger shared that as adults with the disease, they’d both become resistant to some OTC pain relievers and other pain medicines, so it was necessary to explore other options. “Medication is of course a primary resource for relief, but so are many alternative healing methods, such as Reiki, gentle yoga with breathing exercises, meditation, and acupuncture,” says Julieann. While Dawn currently explores a high dosage neuropathic drug with a pain management doctor, she has discussed a possible topical pain reliever with him as well as another last-resort option – a surgery to block pain receptors. Heather Houston wondered if a recent pain management study with burn patients using an interactive gaming pain management method might be able to help EB patients in the future. In the study, burn patients were connected to games set in cold climates which as a result, fooled the brain into thinking the patients’ skin was cooler. Here’s the link to the study Heather’s talking about.

It’s been so exciting to watch our online community grow and look forward to another year of sharing, supporting and helping one another in the EB Resource Forum.

Have a peaceful holiday, everybody!

Sources:

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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