Living with EB

Families living with epidermolysis bullosa may feel sometimes like they are always explaining – explaining why a loved one must eat or not eat certain things; explaining why their skin looks as it does; or explaining why particular toys or seating works better than others in a classroom or play setting to protect their child from injury. It can be tiring and emotionally draining, not just taking all of the precautions themselves, but the constant state of explaining. But families do it because these precautions can truly be life-saving.

We are thankful that there are some resources that have become available over recent years to help families do this one especially tough job, educating others about their family member’s EB. We wanted to mention these again for anyone who may not be familiar with their availability and as a reminder to families who may not have referenced them lately but who did find some usefulness in the past. If you have any other helpful resources or links to suggest to our community members that have been particularly helpful to you in explaining EB to neighbors, school staff and students or even other family members, please share them here in the comments section or on our Facebook page.

  • DebRA’s EB Classroom Video
    The DVD “What Is Epidermolysis Bullosa?" can be especially helpful in breaking down what living with EB is like for families and how students, teachers and other school personnel can support a family’s efforts to keep the student with EB as healthy and safe as possible from the moment he or she arrives in the classroom every day. To order this free DVD from DebRA of America, click here.
     
  • National Institutes of Health (NIH) Q&A about Epidermolysis Bullosa
    A helpful list of some of the most commonly asked questions about EB and their answers are available from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at the NIH site. Click here to check it out and consider adding a bookmark so that the next time a friend or acquaintance inquires, you have a handy link to send.
     
  • Dr. Alfred Lane’s Discussion of EB Research and Treatment
    This is a simple 4-year-old video uploaded to YouTube that features the dermatology department chair and EB researcher from Lucile Packard Children’s Hospital at Stanford University, but it does such a good job of breaking down a complex disease and what scientists are hoping to uncover in their clinical research. Click here to see it for yourself and consider forwarding to others who could use the information.
     
  • Garrett: The Boy Beneath the Bandages
    It is no surprise to anyone watching it that this short film was the winner of the 2010 Rare Disease Day Video Contest. Photographer Andre Hermann mixes images with poignant music, audio and film footage of a day in the life of young Garrett and his family as they cope with the pain and challenges of living with EB. Click here to view part one. (The remainder of it, part two, can be viewed by clicking here.) If ever there were a way to “show” someone else life with EB, this may be the fastest, most compelling way to do so. What are your own thoughts on the video?
     
  • EB Public Service Announcement
    Previously, we posted at our blog this public service announcement video, which has also aired in various parts of the country, in an effort to educate people about EB and what it means for the individuals and families it impacts.
     
  • EB Resource
    We hope that you’ll consider our blog and Facebook community helpful tools that you can also introduce to family and friends as a way of explaining more about EB and what kinds of issues our community members face on a daily basis. In fact, one of our most popular blogs was a special one we did last summer, “100 Links for EB Families,” which featured 100 different EB-related links worth sharing. As you might expect, we learned afterward that we had not even scratched the surface and have since found several more helpful resources, but this blog could be a good starting point in trying to familiarize a distant family member or a friend about epidermolysis bullosa. So consider emailing the the link!