A Story We Must Share

For many of us, telling others our story about how EB has impacted our lives is not easy. As patients, parents, siblings and spouses, each of us has a unique perspective on what life is like when epidermolysis bullosa is an integral part of it. We’ll talk among ourselves on EB boards and in chat rooms, and build an ongoing dialogue on the EB Resource Facebook page or at the EB Friends Ning, a secure online network linking patients, family and friends impacted by EB. When we do get a chance to meet and interact, such as last month’s Patient Care Conference, we’ll look to each other in earnest for support, ideas, and some form of hope that a new piece of advice we’ll pick up from another family might make a difference. Yet sometimes we may feel fearful of really exposing ourselves to others who know nothing about the daily challenges we face as students, as travelers, as caregivers, all because of EB. Why aren’t we telling this story more often?

We’ll share horror stories with each other about a medication highly recommended that didn’t deliver or medical supplies that came up short and left a loved one in discomfort. But how many people do you honestly think you could walk up to on the street who would know what this condition is that has profoundly changed all of our lives in some way or another?

To others who get the opportunity to peek into our homes in person or through a posted video on YouTube or another site, they see how daily wound care routines and safety precautions take up a large portion of our day. For others looking in, what we do and what we are willing to tolerate as patients and as caregivers may seem difficult to fathom.

That’s why I’m so pleased when I cross paths with a link to a new story about another EB family being introduced in an article, book, TV segment or documentary. It represents another voice in the community getting the word out about what EB is, how we manage to live with the disease every day, what concerns and needs are weighing on the minds of EB families everywhere (such as insurance coverage, medical care costs and research trial progress), and why it’s so unbelievably important to make others aware that there are organizations, medical researchers and doctors committed to this cause.

It certainly takes courage to allow yourself to be so vulnerable and let others peek into your life to learn about you, all about you, high moments, low moments, achievements and obstacles. Each time you tell your story, each time I tell my family’s story, we do something very important: we invite others to learn, to ask questions and to get involved. It can be so comfortable to keep to our own trusted circle of close friends and family but it’s critical for each of us to extend those circles and reach out to our communities, to our children’s schools and to our local media.

Every occasion we use to share our story, we grow our sphere of potential support and we help others grow, as well – to become more educated, more aware of the people around them and their needs, and more compassionate and supportive of their community.

I’ve participated in several media interviews over the years because of my role with DebRA and while promoting my own annual fundraiser, the Butterfly Fashion Show & Luncheon, which I hold every Spring. While I won’t say that it’s ever easy to re-tell my own family’s EB story, I know that when that story is told, there will be at least one more person watching or reading who didn’t know about EB that will now be compelled to look it up online and read more, that may feel inspired enough to ask co-workers about whether or not they’d heard of this disease and that might even feel motivated to donate or find other ways to support an organization like DebRA to help families like mine, yours and thousands of others.

To those of you who have held a neighborhood fundraiser and promoted it, reached out to a local news outlet to share your story, or gotten involved in a community health event to teach others about EB, I say ‘thanks.’

And to those who haven’t, I urge you to make that next move to share your story, whatever small step you’re willing to take. It can seem a little scary as you open up to what feels like the world. But for all other EB families sharing those same challenges, long-term concerns and short-term fears, it’s the most assuring, proactive way to do your part to educate and inspire others to invest in finding a cure and better treatments for EB.

But it starts with that first small step. Maybe you’d like to share that story here first in our warm, supportive EB Resource community. And if I can offer any suggestions for how to make that first move to share your own story in your community, I’m happy to help. I’d love to hear from you. Just email me at leslie.rader@hollisterwoundcare.com.