I have had this condition since 2015. The first three years were pretty hard, in time I have learned to deal with it. I have integrated it into my identity. Inspired by this experience, I have authored and published (in Italy) a graphic novel called The Fact Finder. Without being a story solely about MdDS, its main character is much impacted by this condition.
There are some good things this condition brought me. I have increased stress and pain resistance (I developed a strong shell). And I can draw people in movement better 🙂
I have made this painting as a way to visualise, capture, and why not, pay tribute to this invisible condition that is affecting my life but also making me appreciate it more.
I dedicate this to all of you, warriors. ~Alex Bodea
Please amplify our voice and join us in raising awareness, especially as Rare Disease Day approaches.
Alex, a Romanian born, Berlin-based artist, shared Gravitational Pull with us just in time for Rare Disease Day, which is February 28 this year. We will be sharing Gravitational Pull in our next newsletter and social media outlets. Add your voice to ours and share this story and our RDD posts on Facebook, Twitter and Instagram. If you’re on Twitter, be sure to join NORD and Sayed Tabatabai, MD, for #RDDChat22, Feb. 28 from 6:30–7 pm ET. Don’t miss out on Dr. Tabatabai and other physicians answering #raredisease related questions!
We also encourage you to tell your story through art and submit to Rare Artist, a program to exhibit the unique gifts of individuals with, or affiliated with, a rare disease. The Rare Artist Gallery, displaying the artwork and videos of 2021 Rare Artist Awardees, is currently on view as part of Virtual Rare Disease Week on Capitol Hill. Contest submission for 2022 awards opens in June, MdDS Awareness month! Visit Rare Artist for details.