Social Media for EB Storytelling

For many of you, social media has probably become a part of your everyday routine but you may regard it as simply an extracurricular activity you tinker with for fun to reach out to old classmates or keep in touch with co-workers after hours. Others may be just getting their feet wet in Facebook. Wherever you fall on the learning curve with regard to social media, ask yourself this: am I using all of my social networking connections and channels to their full advantage to tell others about EB or even share my story or my family’s story to motivate people to get involved?

We’ve talked before about the power of connecting with others and shared examples of powerful blogs from patients and families living with EB. By blogging regularly and gaining a regular following, these followers have the ability to help spread awareness about the disease, educate others and ultimately garner more support for research and related funding. But what about the other more frequently used tools you come into contact with, such as Twitter, Facebook or YouTube? What can you do to maximize your use of these tools to raise EB awareness? We have a few ideas for your consideration.

  • Twitter – What are you currently tweeting about? Have you considered starting your own Follow Friday-like tradition to tweet solely about EB for a set day or time period every week? For example, you could call it EB Tuesday and commit to tweeting at least five updates that day sharing some information about EB or your own story. You can even introduce this new weekly practice at your other social media accounts to encourage others to follow you on Twitter. And you might want to even create your own hashtag (that is, add #EBTues or something similar behind each tweet so it can become a searchable term later for you to call up all updates at once).
  • Facebook – I’ll bet you often post links here to your friends about interesting local articles or big national news stories. What if you used your presence on the social media platform to promote EB fundraisers to encourage friends to get behind a cause that means so much to you? At the holidays, you could let friends know where they can shop online or in person at sites which give back to EB causes. And you wouldn’t have to commit to sending all EB-related updates all of the time, but when you have your friends’ ear, it can be a great opportunity to remind them in a consistent and unthreatening way that they too can help make a difference in the lives of people with EB like you.
  • YouTube – Many of us bring out the hand-held video cameras for important family occasions or neighborhood sports events but have you thought about hosting your own channel on YouTube? You could give firsthand accounts about living with EB or share useful information with other EB families about great finds you’ve discovered for yourself or your child, such as EB-friendly clothing, toys or gift suggestions. Perhaps instead of blogging, you’d prefer to setup your webcam and simply tell your story right into the camera, no writing involved, and begin recording other friends’ or family members’ perspectives on living with EB, enabling others unfamiliar with the disease to hear directly from patients or their loved ones. It also can be a great way to show empathy and support for patients and families who may have recently been diagnosed by demonstrating that they are not alone, and there is a community out there which understands them and wants to support them whatever way they can.

The website focuses on news stories examining the reach and practice of social media, and includes a section called Social Good that demonstrates the various ways people are using social media for philanthropy. Reading what others are doing to raise funding and interest in their causes may inspire you to take action and use your social media accounts in a completely new way. You may want to check out this site, as well. Cheers to your mission to spread the word!


Social Good section,

Related Posts:

The Importance of Connecting

Blogging Your Story: Five Things You Should Know

Free EB Information Resources

Comments are closed.