What has always struck me about the EB community is how generous and thoughtful its members are with each other, even in the face of personal loss. I have witnessed on many occasions families who’ve watched a diagnosis of epidermolysis bullosa result in the loss of a child, turn to help another family in need as they are first learning about EB and trying to gather what it will mean short-term and long-term for their family.
It’s difficult to describe what our community is like to others who have not been directly impacted by a rare disease like EB. Community is truly the best word to use to articulate the connection between members, whether they face EB head-on daily or may have cared for a loved one diagnosed with it, years earlier. There is a special environment among the parents and the children, one of understanding and a unity of sorts. It’s not one that excludes others who wish to show compassion or support but more of an emotional bond that brings together these families sharing a unique experience and one that can be less overwhelming, when armed with the knowledge that they are not alone.
As families, we can support one another in fundamental ways and it may escape us, going about our busy lives, all that we can do to make a difference. For example, people can offer wound care suggestions to families recently diagnosed with EB that may be still trying to determine what their daily care regimen is going to look like.
With the rise in popularity of social media, we can use tools like Facebook, Twitter and Google Plus to reach out regularly and show support, whether it’s just checking in with a parent to see if they have any questions or issues that a more experienced EB caregiver may have faced already, or even setting up a weekly phone call or online chat to serve as a channel for support.
Then, of course, there are indirect ways we can help one another: Following each other’s blogs and sharing them with our own online friends to educate others about EB or continuing to hold supply drives or fundraisers to support other EB families, even if we may not be directly impacted by EB.
I have commented before that an EB parent will always be an EB parent. We must find new ways every day to be there for each other, and look out for one another, too, for ways to provide a greater scope and depth of clinical information where missing, material supplies where deficient and emotional support where needed. That is what the definition of community is all about.