Age: all ages
Pagination: 28 pages
Size: 210 x 148 mm
Language: French
Publication: September 2026
Free
“Being different doesn’t mean being less.”
In this intimate and inspiring story, Blandine shares her journey with White-Sutton syndrome, a rare genetic disorder that was diagnosed late in life. She recounts the misunderstanding and pain she faced, but also the strength that comes from acceptance.
A voice for those who have none, a message of hope for everyone living with a difference.
A heartfelt account that reminds us that difference can
become a source of strength.
First identified by Professor Sutton and Dr. White in 2016, White-Sutton syndrome is a rare genetic disorder caused by a mutation in the POGZ gene. It primarily affects neurological development. People with the condition often have intellectual disability, language disorders, and learning difficulties. Distinctive physical characteristics and behavioral disorders, such as autism or anxiety, may also be present. Diagnosis is based on genetic testing. While there is currently no cure, appropriate care—including educational therapies and medical monitoring—can improve patients’ quality of life and promote their independence in daily living.
The White-Sutton France Association, founded in 2019, aims to raise awareness of this rare genetic disorder among the general public and healthcare professionals, support patients and their families, and foster connections among families. The association provides information, organizes gatherings, and participates in scientific research. It also plays an important role in assisting with administrative and medical procedures. Through its commitment, it helps break the isolation of families and improve the day-to-day care of those affected.
Website: www.white-sutton-france.fr
