The Benefits of Writing a Monthly Column About EB
In the spring of 2018, I was lucky enough to meet a member of the BioNews team (the parent company of Epidermolysis Bullosa News) at the European Conference on Rare Diseases and Orphan Products in Vienna. Brad, the director of columns, asked me if I was interested in writing a column about living with a rare disease.
I didn’t know what to expect. But I was flattered and excited, and immediately agreed. Brad and I met online to discuss more details, and then I was on board.
Starting ‘Girl With the Butterfly Tattoo’
I live with epidermolysis bullosa (EB), a rare skin condition that causes the skin to blister and tear easily. It can be very painful, but I’ve had to accept it and grow with it.
EB has added many obstacles to my life, but it’s also brought me many opportunities, including the chance to write this column, “Girl With the Butterfly Tattoo.”
I didn’t expect it to take me two months to write my first column. For the first time, I had to think about what I wanted to tell the world regarding life with EB, rather than simply answering questions.
Asking myself questions
When I was young, my father, along with other parents of “butterfly children,” founded the EB patient organization DEBRA Austria, so I was used to being in the media and being asked about my condition. I had to answer the same questions many times. I don’t mean to complain — I’ve always recognized the importance of talking about it and raising awareness about this incurable disease.
However, there is a huge difference between answering questions from others and those I ask myself. In the summer of 2019, I had to really consider what I wanted to tell the world. What moves me, inspires me, saddens me, makes me happy, keeps me wondering, and matters to me?
I had to get in touch with my condition and how I live with it. I had to start observing myself and get in touch with feelings that I’d tried to bury or no longer noticed.
And in October 2019, my first column was published.
Checking in every month
Now, I must get in touch with my inner self. I have to ask myself: What is occupying my mind at the moment? Am I afraid of anything? What worries me? What’s making me happy or giving me confidence? What do I want to share with the world?
This month, I want to be grateful. I am grateful for this opportunity to write, because I’m getting to know myself on a different level. I understand myself more with each column. This gives me strength and hope, and it makes me proud.
It takes courage and strength to write down my deepest thoughts, and sometimes I find myself still searching for the perfect topic on the last day before my deadline.
But then, my column is out there. I get to read my writing, with my name on it, on an international platform. And I receive feedback from my lovely editors (thank you so much for keeping up with my grammar mistakes!), other members of BioNews, my friends and family, and my readers. And this makes me very happy and proud!
Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.