The Importance of Connecting

As an adult or child living with EB, sometimes it can be difficult to be as involved as we might like interacting with others and participating in extracurricular activities. We may feel our differences surpass our similarities with others our age. For family members, it similarly presents unique challenges as a parent struggles to relate her world to others who haven’t experienced living with EB firsthand or must explain why it’s necessary to take extra precautions beyond what other parents take with their children. There are simply conversations you want to have with others, but often no one else shares the same kinds of questions or concerns about their children.

As a patient, as a parent, or as a supportive family member, you owe it to yourself and your family to reach out. In the past few years, many more opportunities have emerged for EB families to connect with one another – and many require little or no cost beyond an investment of a little time and a willingness to share and offer support and suggestions to others while they do the same for you.

  • Social Networking.
    Many families have found sites like YouTube and Facebook have provided great channels to share videos, photos, information, and personal support to others. We’ve watched with awe and pride as our own Facebook page has grown from just a few fans to well over 800 followers in less than a year and a half.
  • Online Communities.
    Password-protected web communities such as EB Friends offer safe member-only forums for patients and their families to feel they can share freely and engage in open and honest dialogue with others going through similar situations in a free, nurturing environment.
  • Support Groups.
    While it may be difficult to find support groups specific to EB patients and their families, local hospitals frequently offer a variety of groups that may still be of interest. These may include groups for individuals serving as caregivers for family members or for parents of children battling chronic conditions or life-threatening illness. There are even some online EB support groups available to connect families across the country in a virtual meet-up, such as at
  • Fundraisers and Awareness Events.
    More and more families across the country are coordinating fundraisers and other events in their neighborhoods to raise awareness about epidermolysis bullosa. Whenever possible, set out to attend and promote others’ events through your own personal channels to help build a sense of community among EB families everywhere – regardless of their physical location. And if you’re able to attend, too, that’s an even better way to personally make that connection.


EB Resource Facebook Community

EB Friends

MD Junction Online EB Support Group

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Stress Management for Caregivers

Free EB Information Resources

The Facts about Depression

Trackbacks / Pingbacks

  1. 100 Links for EB Families | EB Resource
  2. A Talk with EB Support Group Leader, Connie Flowers, Part I | EB Resource
  3. Social Media for EB Storytelling | EB Resource