Fibrous Dysplasia Diagnosis Inspires Camryn

FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) and build support for public health and research that will improve the lives of FD/MAS patients. In 2024 we celebrate the fifth annual FD/MAS Global Awareness Week.

Global Genes reached out to the FD/MAS Alliance about stories from the FD/MAS community about their diagnosis, treatment, therapy, and advocacy journey. 

Camryn Berry was diagnosed with fibrous dysplasia as a child, and turned her diagnosis into a career in the field, and being an advocate for those with the condition. See what she says about her journey with fibrous dysplasia, and how it has changed her life.

Video courtesy of FD/MAS Alliance

Camryn, who was diagnosed with fibrous dysplasia, speaks at her graduation

Fibrous Dysplasia (FD) and McCune-Albright syndrome (MAS) are rare, chronic diseases caused by a random, uninherited gene mutation on the 20th chromosome. FD presents as soft, malformed bones susceptible to fracture, chronic bone pain, and deformity. MAS is the combination of FD and abnormal hormone levels and/or rough-bordered birthmarks.

FDMAS Alliance is a community-driven 501c3 nonprofit that fosters the development of evidence-based treatments for Fibrous Dysplasia and McCune-Albright syndrome (FD/MAS). They advance research, provide education, and channel the voices of individuals and caregivers with FD/MAS.

Because both fibrous dysplasia and McCune-Albright syndrome are caused by a mutation on the 20th chromosome, the FD/MAS community holds FDMAS Global Awareness Week starting on Feb 20th and leading up to Rare Disease Day!