THE DYSFERLINOPATHY JOURNEY

Individual Stories

THE DYSFERLINOPATHY JOURNEY

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.

Dysferlin Registry member Allison

Allison’s Story

Dysferlin Registry member Andy

Andy’s Story

Dysferlin Registry member Bathri

Bathri’s Story

Dysferlin Registry member Becky

Becky’s Story

Dysferlin registry member Bliss

Bliss’s Story

Dysferlin Registry member Brad

Brad’s Story

Dysferlin Registry member Breyanna

Breyanna’s Story

Dysferlin Registry member Chanry

Chanry’s Story

Dysferlin Registry member Chris

Chris’ Story

Dysferlin Registry member Dan

Dan’s Story

Dysferlin Registry member Isaac

Isaac’s Story

Dysferlin Registry member Jennifer

Jennifer’s Story

Dysferlin Registry member John

John’s Story

Dysferlin Registry member Josh

Josh’s Story

Dysferlin Registry member Kurt

Kurt’s Story

Dysferlin Registry member Larry

Lary’s Story

Dysferlin Registry member Marlen

Marlen’s Story

Dysferlin Registry member Said

Said’s Story

Dysferlin registry member Sharon

Sharon’s Story

Dysferlin Registry member Steve

Steve’s Story

Dysferlin Registry member Tania

Tania’s Story