Text: Joëlle Cachin
Photo: Jeanne Martel

“My disability has made me who I am”

Ségoleine Schmutz was born with spondyloperipheral dysplasia. One of the consequences of this genetic disorder is abnormally short stature. Living with this 
disability is a daily struggle.

“When the friends of my 6-year old daughter ask me about my height, I tell them that I didn’t eat enough soup when I was their age!”

At age 43, Ségoleine Schmutz is 1.32 metres tall. She talks about her physical appearance with humour and resilience. “You never totally come to terms with the way others look at you. It’s hard on those days when you’re tired. It’s easier when your mood is brighter.” When she was born, the Vaud native suffered from malformations in her legs and feet. “I was first diagnosed with achondroplasia, a bone growth disorder that is the most common cause of dwarfism. But I never felt comfortable with that label because my physical features didn’t fit the description.”

In 2003, a more in-depth genetic test came up with a new diagnosis, spondyloperipheral dysplasia, a genetic disease that affects less than one person out of a million. “I knew that it wouldn’t change the treatment, because there is none, but it helped me accept my disability.”

Today, Ségoleine Schmutz works as a medical advisor with a health insurance organisation. She has had to adapt her profession to her disability, as patient consultations are physically too exhausting. Just one of many adjustments. “Store shelves, supermarket trolleys, ATMs. Nothing is designed for me. But with some resourcefulness, some humour and a stool, I can do it!

Eleven years ago, Ségoleine Schmutz and her husband were confronted with the dilemma of pregnancy. “I had a 50% chance of passing on the gene responsible for my illness to my child.” The decision wasn’t an easy one, but we went ahead with the adventure of parenthood despite it all.” In 2006, she gave birth to a healthy baby boy. The couple then adopted a little girl to avoid “tempting fate a second time”.

In 2015, two students set up an organisation for people of short stature as part of their graduation project. “These young women prompted the creation of an organisation for persons of short stature in French-speaking Switzerland, in May 2016.” Ségoleine Schmutz is president. “By sharing with parents of children affected by short stature, I’m becoming aware of everything I myself have accomplished. Despite the arthritis and pain, I wouldn’t change my situation for anything in the world. My disability has made me who I am.”