I am 64 years old and have lived my entire life with EB Simplex (EBS). I mainly blister on my feet and hands. My mother had EBS, and my sister has it as well. Interestingly, we spent most of our lives not even knowing it was EB or EBS. We weren't diagnosed specifically with EB until we were middle-aged.
EB kept me out of sports as a kid and has otherwise challenged me (now and always) to balance activities with my needs. What shoes to wear has always been an issue. Traveling, for example, I have to think about how much walking I need to do to navigate an airport and trade that for seeing sights by walking. I did a lot of traveling in my professional life and spent many nights dealing with blisters, bandaging my feet in preparation for the next day's schedule.
Both kids and adults can have little sympathy for blisters and walking issues when you otherwise seem quite normal. So, there is a bit of an emotional component to dealing with EBS.
As a young man, I was concerned that work would be affected because of my EB. I couldn't do labor that made me walk or use my hands repetitively. I managed, but that was a real concern and issue for me at times. EB keeps me heavier as my activities are lower, but I've learned to live with it, of course. Now, I participate in things like this to do my small part to help others and find solutions to EB-related problems or improvements to care.
It's always a balance in life. Most people I know don't think twice about walking, but I often have to. If it's hot, I can't or shouldn't walk, or I suffer the consequences of blistering feet. Most of the time, for me, it's the little things like that, and honestly, I've learned to live with it. As an older adult, I can now be upfront and honest with people. I can say, "I have this issue and can or can't do this or that." It's easy for me now, but it was challenging for much of my life, as other people don't quickly see someone with blistering feet as having an issue that could be a disability.
I'm so happy to be a part of debra, to know that the organization exists and works to improve care and increase awareness. I just want to do my part. The newsletters and connections to others have made me feel better, knowing that others face my small challenges and that too many are affected greatly.
