Our Facebook Community & the Power of Sharing

We love our EB Resource Facebook community, and it’s been so exciting to watch it grow. We’re coming upon the completion of just our second full year since launching, and we’ve grown to nearly 950 members! Nothing inspires us more than to see members post questions or information directly on the page for the group or start a dialogue with other members about some of the questions that we raise from time to time.

There are many different ways we can help each other as a community – from sharing insight about experiences we have been through, to educating and preparing others for what may lie ahead, to passing along info about favorite brands of clothing that our children have liked that are EB-friendly. The power of sharing is tremendous and we are reminded of this every day.

** 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.

  • The Facebook community is a great place for others to share how they’re handling upcoming holidays or special events. During EB Awareness Week, we asked members what they planned to do that week in honor of the occasion. Amber Jensen shared that she would be posting something every day that week about EB for her friends. Arnaud Buisson extended an invitation to any French followers in the community to join another Facebook group as well, DebRA France, and even changed his profile picture that week to the French organization’s logo. Not too long ago, many of us also were fretting about Halloween and how to keep this holiday fun for our kids who might struggle with scratchy masks or uncomfortable costumes. Logan England suggested making use of a sweatsuit as the basis of a fun costume. “Logan writes, You can do all kinds of things with a sweatsuit…paint bones on a black suit for a skeleton, or a hoodie sweatshirt with yarn pieces attached can be a lion’s mane, felt pieces for stripes and a headband with ears can make a tiger or zebra.” We absolutely love your creativity. File those ideas away for Halloween 2012 or the next costume party that pops up!
     
  • In September, one question we posed really drew a lot of responses from the community: when discussing daily EB challenges with other family members, what areas tend to raise the most questions or confusion? Katie Alexander Murray noted that people don’t seem to understand there are problems occurring internally as well as externally for those with EB. Others, as Elisabeth Upton Booth points out, seem to think it is just a temporary condition. “Some of our family think it will just go away! They don’t understand why Aiden is so grumpy – they think he is just being naughty,” she says. And then there are the misperceptions about the rest of the family, as Trisha Knuth notes. “Some people feel sorry for my ‘healthy children.’ They seem to think that because of Charlie’s EB that the other kids don’t get attention or fun times. That is way off,” Trisha writes. “Our healthy kids often have to wait to go to places or leave events early, but I can promise you that they would take Charlie any day over an island vacation, or a trip to a theme park.”
     
  • We know that as our community grows, we will be welcoming new members who may also be new parents of a child with EB, so we asked our members, during your first year of learning about EB, what questions would you suggest families ask early in the care process? Amy Stiller Bailey mentions eye abrasions as being one key care area that she did not realize would become an issue. “Kendall was probably in a lot more pain with abrasions and light sensitivity than I ever knew,” she says. In her family’s case, she says antibiotic drops and anti-inflammatory drops (both obtained through prescriptions) were the key to helping her child. Josie Tripp urges new parents to educate themselves as much as they can, ask questions and not be afraid to ask for help. “Get a good support system and connect with other EB families,” Josie writes.
     
  • Another major topic of interest directly impacting EB patients and their families are wound dressings. So we asked our community to chime in with what criteria they use when selecting dressings. Julieann Morabito wrote that she prefers to stay away from dressings with any potential to stick and suggests checking that the dressing provides “enough cushion to keep the wound from ‘screaming.’ ” She also takes into account how well the dressing absorbs. Jamie Gooch concurred that a dressing’s ability to be non-sticking on the wound or around the wound was important, as well as comfort.
     
  • In August, we asked our EB Resource members, if you could create your own starter kit for EB families, what would you include? Mirandy Donley rightly noted that the different types of EB may mean different needs, but in general, among her items, she would include a plastic box for soaking feet and hands, instant ice packs, gauze, bottled water, healing ointment, clean socks, and caster oil, among other things. Renee Fulton agrees that a soaking tub can be helpful and also adds “and a hug.” Maggie Cervera-Escobar also feels some of the most valuable tools new parents can use are “lots of patience and love.”

Have you joined the dialogue yet in our Facebook community? There are so many interesting conversations taking place there every day. We hope to hear from you soon, too.

Sources:
EB Resource Community

Related Posts:
EB & Educating the Rest of the Family
Doing Our Part: What Can You Share?
Support Networks vs. Support Groups

Urgent! $15 Million EB Research Funding Opportunity

Dear DebRA Friend/Family:

DebRA urges you to act now! A Member of Congress has asked us to pass on this very important message to you. We only have three days to act and cannot delay. On behalf of all people living with EB please call, email, or fax your local Senators and Representatives asking them to sign on to the EB appropriations requesting $15 million in funding for EB Research.

For contact information for your local Senators and Representative(s), please visit: http://www.congress.org/congressorg/directory/congdir.tt.

You can also email or fax the following message to your Senators and Representatives:

On behalf of all people living with Epidermolysis Bullosa (EB), every military burn casualty, and the thousands of veterans suffering from diabetic ulcers, we respectfully request that you provide funding of $15 million for EB research within the Congressionally Directed Medical Research Programs (CDMRP) in the fiscal year (FY) 2011 Department of Defense (DoD) Appropriations Act.

A $15 million appropriation to fund EB research within the CDMRP in the FY 2011 DoD Appropriations Act would move us closer to finding a cure for this heartbreakingly painful and often life-threatening condition. It would give hope to the military and civilian families struggling to find effective treatments for their EB-afflicted children; help provide relief to the millions of Americans suffering from diabetes-induced ulcers; and contribute to advanced care for U.S. combat veterans recovering from thermal or chemical burns. Thank you for your consideration of this request.

Please forward this message to your friends, neighbors and family. Your support can make a huge difference!

Thank you for your support,

Dystrophic Epidermolysis Bullosa Research Association

We Want to Hear from You

This week, we’re going to be launching a new survey here in the EB Resource community, and I want to personally invite you to take part. All of us here have been faced with different challenges, as patients, parents and caregivers, yet we share a common bond. Our Facebook forum offers us a chance to share our personal stories, experiences and information we’ve gathered over the course of this journey. This new survey is just another step to understanding our members.

To get to better know our community, it’s helpful for us to find out more about our members’ unique needs and practices through a means that respects personal privacy and confidentiality. So we’ve designed this short, easy-to-complete survey to reach out to those with EB, parents caring for a child with EB, and other independent caregivers for those facing the disease.

As you navigate the survey, you’ll find questions about your daily routines (the frequency of your dressing changes, the kinds of doctors you work most closely with, some of your favorite products, such as soap, gauze, etc.). You also will find more needs-based inquiries (for example, what kinds of supplies or services do you find yourself needing that insurance does not cover?) I urge you to participate in the survey, share your viewpoint, and be as honest and specific as you can. And again, know that all of your feedback is being transmitted to us anonymously, unless you choose to provide your contact information which is completely optional.

Your feedback means a lot to Hollister Wound Care and we appreciate you taking a few minutes to fill out the survey coming your way soon in the EB Resource community, and we’ll be sure to share some of the results of the survey here in the near future, too! If you experience any concerns or have questions about the survey, please feel free to email me at leslie.rader@hollisterwoundcare.com.

And thank you in advance for taking part!