Individual Stories


Individual Stories

Home ❯ Patients/Clinicians ❯ The Dysferlinopathy Journey ❯ Individual Stories

These patients have generously shared their stories of living with dysferlinopathy, including their initial symptoms, path to diagnosis, and disease progression. We hope that these personal accounts will serve as a source of information and inspiration for other dysferlinopathy patients and researchers searching for a cure for this disease.

Click here to watch a video of Bliss talking about her experiences during the 2013 Jain Foundation Dysferlin Conference.

Allison’s Story

Andy’s Story

Bathri’s Story

Becky’s Story

Bliss’s Story

Brad’s Story

Breyanna’s Story

Chanry’s Story

Chris’ Story

Dan’s Story

Isaac’s Story

Jennifer’s Story

John’s Story

Josh’s Story

Kurt’s Story

Lary’s Story

Marlen’s Story

Said’s Story

Sharon’s Story

Steve’s Story

Tania’s Story