The daily life of superheroes with Ehlers-Danlos syndromes
School with Ehlers-Danlos syndromes
Ehlers-Danlos syndromes are linked to a collagen anomaly. This rare and orphan genetic disease remains little-known. The non-profit organization GESED (Groupe d'Entraide des Syndromes d'Ehlers Danlos) is committed to raising awareness of the disease, and is present among patients. GESED has been active in Belgium for over fifteen years, working with involved families and the medical world.
Our joint project focused on young patients in schools. The main challenge was to raise awareness of the physical and moral difficulties experienced, in order to raise awareness of the problem of harassment and encourage respectful attitudes and gestures.
Classes for young teenagers suffering from these syndromes know little about the causes, consequences and precautions to be taken. Comic strips have proved to be the best medium for informing, raising awareness and opening up discussions. They can be read by teachers, classmates and parents. It explains without dramatizing or victimizing.
The Ink Link team of artists
To produce an adapted comic strip, The Ink Link and GESED chose Simon Kansara as their scriptwriter. You know him from his comic and digital project Media Entity and the comic strip he created on shared housing avec Soliha.
After reading and studying the medical data, Simon conducted interviews with several teenagers and adults affected by the syndromes. They were able to express their feelings, the difficult moments in the classroom, the situations they had experienced. Based on these examples, Simon created a ten-page fictional account of the key stages in a good life together.
For the art, GESED already had a favorite: the team discovered The Ink Link through the author Louise Joor and her comic book Kanopé. Also Belgian and sensitive to the subject, she was more than happy to oblige!
Our comic strip follows a brother and sister in their daily school life. Their sidekick bird raises questions about the disease and makes it accessible to readers. Enjoy the preparatory sketches of our three superheroes!
The final comic strip has been printed in a 16-page booklet, available on request from the association at BD@gesed.com.
In March 2020, our comic strip was awarded the Edelweiss prize by RADIORG, the European rare disease association, in the 'Association Project' category.
This prize rewards our original approach and our commitment to working closely with associations and their beneficiaries.
