“His video made me cry because I share his suffering,” says Lea, 35, of Celine Dion’s recent testimony. The Canadian singer announced on December 8, in a video posted on her Instagram account, that she suffered from stiff person disease, also called Stiff-Person syndrome (SPS). This extremely rare neurological disorder affects only one in a million people. Lea is one of them.
In the video above, the young woman recounts her daily life, between spasms and extremely painful chronic stiffness. She experienced medical wandering for almost five years before being diagnosed in 2021. She has since joined the Stiff Person Syndrome Research Foundation and hope that the testimony of Celine Dion will help advance research into this rare disease. “I’m sad for her but it’s a gift she gave us by having had the courage to make these videos, because we no longer suffer in silence. »