At Brest University Hospital, an exhibition makes rare diseases visible thanks to patients’ creations

On the occasion of International Rare Disease Day, the Brest Hospital and University Center welcomes the “R’Artistes”: patients who exhibit their works to raise awareness of their little-known pathology.

On February 29, the world celebrates International Rare Disease Day. This is an opportunity to provide a refresher on the fight against these unusual conditions. Cystic fibrosis, Ménière’s disease, Charcot disease, Crohn’s disease, Duchenne muscular dystrophy, etc. With around 7,000 rare diseases listed, these pathologies, according to the World Health Organization, affect less than one in 2,000 people.

In total, no less than 3 million people are affected by rare diseases in France, each facing unique challenges and complex medical pathways. To raise public awareness of these often little-known realities, the University Hospital Center (CHU) of Brest has organized a very special exhibition: R’Artistes.

In an unusual room, called the “room of possibilities”, the Brest University Hospital welcomes around fifteen exceptional artists, all affected by a rare disease, to exhibit their creations.

Ranging from painting to drawing, including embroidery and crochet, everyone has their own means of expression. Among them, Ysée, a 9-year-old girl, who presents her triptych.

Her journey embodies hope in the face of illness. A few years after her diagnosis, she defied the odds. Her mother, Caroline Hostiou, testifies with emotion of her daughter’s transformation: “She shouldn’t have walked, she shouldn’t have talked, now she runs everywhere, she talks better and better, she’s constantly evolving.”

But Ysée does not just defy medical expectations, she also expresses herself through art, finding in creation a way to make herself understood.

The medical team from Brest University Hospital and Rares Breizh, aware of the importance of raising public awareness of rare diseases, set up this unusual exhibition. A time for discussion was also planned around the creations of the R’Artisteswith health professionals and patient associations.

That day, the pediatric neurologist, Adélaïde Brosseau-Beauvir, wanted to emphasize the importance of making these conditions visible and publicizing: “Most of the people who will come don’t know what a rare disease is, what organ it can affect, we all have our ideals about diseases.” Faced with the sometimes disconcerting invisibility of disability linked to rare diseases, art proves to be a beautiful way of revealing oneself. “Expressing oneself in this way is also to catch the eye, to raise awareness that these patients exist, and that there are also medical sectors, reference centers for each of these pathologies”explains Dr. Brosseau-Beauvir.