Faces of FD/MAS: Camryn’s Story
Faces of FD/MAS is an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community.
This giving season, we’re focusing on the story of Camryn Berry, an FD/MAS patient, and 3rd-year Ph.D. student studying fibrous dysplasia, McCune-Albright syndrome. Camryn also participated in the Faces of FD/MAS project and shared her story while attending the recent FD/MAS Community Conference.
We’re thrilled to share her story as the first release in this series.
“Having fibrous dysplasia has given me this deep sense of self […] I was able to turn my diagnosis into this mission for the future. That’s what gets me through.” – Camryn Berry
FD/MAS is a complicated and rare disease. Those diagnosed with the disease and their caregivers often feel overwhelmed and alone. Faces of FD/MAS hopes to give comfort and community to those in the FD/MAS community by demonstrating that they are not alone and that those with FD/MAS can lead full, vibrant, and successful lives.
The project simultaneously illustrates the great need for improved understanding and treatment outcomes and the urgency for research and quality-of-life advancements.