I was diagnosed with EB Simplex at an early age. EB is prevalent in my family tree, my father, sister, aunt and a couple cousins also have EB. Blistering first occurred on my waist, which my father quickly recognized as EB. I was fortunate to have my father caring for my EB because of his life experience with the disease. Additionally, growing up with my sister, who also had EB and could relate to the challenges of the condition, only strengthened my support system.
Living with EB has been challenging for me physically and mentally. Growing up with EB, you quickly learn that wearing clothes and shoes that are loose and comfortable are vital for the prevention and care of blisters. I always felt I wasn’t ‘normal’ and didn’t quite fit in because I wasn’t able to wear trending clothes and shoes. Additionally, I enjoy being active and have played several sports, which proved to be complex when managing my skin because I wasn’t able to participate in every practice or game. I didn’t explain my skin condition to many people, including friends because I didn’t want to be treated differently. I would push myself to participate in events/activities even if it resulted in severe blistering because I didn’t want to be a burden to others and sought acceptance.
I have learned to overcome these physical and mental challenges by altering my mindset about my skin condition and accepting that I am unique. Having compassion for myself and my physical limitations has taken years to accept but this eases the mental hardship I experience. Furthermore, overtime, I have learned new techniques for proper care of my skin. I wear breathable shoes and constantly switch pairs of shoes when participating in physical activities. Soaking my feet in Epsom salt has become a part of my blister care routine.
My husband is my biggest supporter; he has worked diligently to ask questions, research and understand EB. He is very encouraging and significantly contributes to my joy when my physical mobility is limited. He has carried me many times when my blistering was severe, and I was unable to walk. I am incredibly thankful for his support. I also have hope that the pain will subside, and the blisters will heal. I am confident in my care tactics and know that I am strong and will make it through. Although EB is debilitating, it has made me a stronger person and I have hope that I will always be better because of it. Lastly, I have the cutest emotional support rabbit, that has contributed to my joy.
Two years ago, I saw a post on an EB support page on social media about an individual that submitted a Ceremonial Proclamation for EB Awareness Week in their home state. I was inspired by this post and decided I would write and submit a Ceremonial Proclamation for EB Awareness Week in Washington State for 2021. I was able to accomplish this by: first, navigating to the Washington Governor’s website, reading the guidelines on requesting a ceremonial proclamation, reviewing the example document provided to understand the proper format, researching information about EB that I wanted displayed, then submitting the proclamation. Ceremonial Proclamations in Washington State do require resubmission annually, so I have re-submitted the proclamation for 2022 and it was recently approved and published! I have been sharing these proclamations on my personal social media pages as well as EB support pages on social media outlets. I plan to continue these efforts of supporting EB awareness!
I really enjoy being active, especially taking short hikes to waterfalls or scenic views. My EB does hinder me from hiking long distances, but I do take preventative measures such as: hiking in cool weather, bringing a change of shoes and using foot powder to keep my feet dry while walking/hiking. Another hobby I have is knitting. EB does somewhat hinder this hobby, if I knit for an extensive period of time; however, I tend to knit more in the winter which helps prevent blistering.
My message to the EB Community: You are strong! EB is taxing physically and mentally, so have compassion and patience for yourself. Even though you may be physically limited, that does not impact your value/worth. Don’t be afraid to tell others about your EB and discuss your challenges. I previously had the mindset that my EB would be repulsive and a burden to others, so I neglected to share my limitations, which resulted in excessive pain and mental strain on myself. Finally, I admire people with EB because of their perseverance and strength!
EB is a unique disease and it takes a resilient person to overcome the daily mental and physical trials. Have patience with others, especially those with EB, because you may not know what challenges they may be experiencing.
- Savanah Zech
