Tag:

Testimony

Eric describes the multiple bereavements experienced with cystic fibrosis: the announcement, the loss of a “normal” life, the overwhelming role of caregiving, letting go as an adult and, sometimes, the ultimate bereavement. A text about love, powerlessness and the lasting marks of mourning.

Amélie recounts the transition to adulthood with cystic fibrosis: more autonomy, a significant hospital transfer, new responsibilities, but also the strength to adapt and move forward with courage.

Sophie Vaillancourt testifies to the pain and feeling of injustice experienced by people with class 1 mutations, for whom CFTR modulators are not an option, while calling for equitable access to treatments for those who can benefit from them.

A teenager with cystic fibrosis testifies that her adolescence is not “ordinary”, but that by accepting her difference, she found strength, identity and pride in her journey.

Through the experience of a mother and her seriously ill son, this article invites us to reflect on the relationship to time, the importance of the present moment and the positive traces that each person leaves in the lives of others.

Sarah Dettmers tells how her personal and family journey led her to become a committed ambassador for cystic fibrosis, between awareness, resilience and the urgency to live.