I’ve written about EB here on my blog in the past – giving you my story of what it’s like to have EB. (https://youempoweryourhealth.com/2015/10/28/epidermolysis-bullosa-week-october-25-october-31/) This year for EB Awareness Week 2016, I’d like to just focus on getting people aware of EB and how to help find a cure.
In today’s world of social media, there is not so much of a ‘taboo’ in talking about EB or just suffering alone with it. That’s the one thing I DO love about social media – there are so many ways to find support, find new friends, find answers to questions you may have had and share with people just like you – no matter what the disease! I’m so thankful to the many new friends I’ve met who knows what it’s like to live with epidermolysis bullosa. (By the way – if any of my EB’ers want to share their story, ideas, etc. this week for EB Awareness Week, message me and I’d love to publish here on my blog).
debra of America (Dystrophic Epidermolysis Bullosa Research Association of America) in the United States is an organization dedicated to informing, teaching and increasing awareness for those suffering with this disease. There is also a debra International.
Show some love to these organizations and the different links to find out how you can participate in helping physicians, researchers, etc. find a cure for this incurable disease!