Rare Disease Awareness: Author Shares Story of Living with Uncertainty & Finding Strength

CHAUMONT-GISTOUX, Belgium – Isabelle Vandeput, a 53-year-old resident of Chaumont-Gistoux, has published a book titled “Moi zèbre, toi cheval” (Me Zebra, You Horse) detailing her experience living with Strumpell-Lorrain disease, a form of hereditary spastic paraplegia (PSH). The book, released in November 2025, aims to raise awareness about the challenges faced by individuals with rare diseases.

Vandeput’s journey began when her mother received a diagnosis of the same condition 18 years ago. “Since my mother’s diagnosis, I lived with a Damocles’ sword over my head, knowing it was probable that it would happen to me one day,” she explained in the book’s preface. The disease, which causes progressive paralysis of the lower limbs due to muscle contractions known as spasticity, manifested in Vandeput in her early 40s.

“Moi zèbre, toi cheval” emerged from a desire to articulate the daily barriers encountered by those with rare conditions. Vandeput began writing during the COVID-19 pandemic, responding to questions from family and friends. “I had this need to write at first. A book wasn’t necessarily the initial project, but it became one over time,” she stated. The book seeks to highlight issues such as social isolation, physical and psychological obstacles and difficulties with professional and social integration.

The zebra serves as a symbol for rare diseases, representing the idea that what might initially seem like a common horse (common illness) is, upon closer inspection, a unique zebra (rare disease). Vandeput’s family history is also significant; her grandmother also suffers from the same condition, making her the third known generation within her family to be affected by Strumpell-Lorrain disease.

Vandeput, who works as a teacher of Germanic languages at the Saint-Albert Institute in Jodoigne, and is a mother of two adult children, emphasized her intention to avoid a purely sorrowful narrative. She hopes the book will convey a message of hope, similar to the film “Un p’tit truc en plus,” suggesting that individuals with disabilities possess a unique strength and richness. “I hope this book can convey the message that a person with a disability indeed has that little something extra, that richness that sublimates them,” she said.

The book is illustrated with watercolors by José Lecuyer, an artist from Chaumont-Gistoux. “Moi zèbre, toi cheval” is available for purchase for €20 at www.publier-un-livre.com/fr/accueil.

According to data cited in the book, approximately 500,000 people in Belgium suffer from rare diseases, with over 6,100 different rare conditions identified. 72% of these conditions are genetic in origin, 70% begin in childhood, and many result in premature death.