Patient Stories

Alison, a patient with AL amyloidosis, describes her transition from being a nurse to being a patient, her journey to diagnosis, undergoing a bone marrow transplant and chemotherapy, and advice for others living with AL amyloidosis.

Dawn, a patient with hereditary ATTR amyloidosis, describes her experience as a hereditary amyloidosis caregiver and patient, experiencing the onset of symptoms, her treatment journey, and advice for others living with hATTR amyloidosis.    

Sean, a patient with hereditary ATTR amyloidosis, describes his journey to diagnosis. Over an agonizing seven-year journey to diagnosis, Sean received bilateral carpal tunnel surgery, a hospital trip after a dire cardiac event, and saw multiple doctors fail to diagnose his amyloidosis. In his story, Sean shares the reason he is optimistic about the future and advice he has for others living with hereditary ATTR amyloidosis or still searching for a diagnosis.    

Ralph, a patient with Wild-Type ATTR amyloidosis, describes his journey to diagnosis. A commercial and technical diver, Ralph’s bilateral carpal tunnel was often attributed to his career. After multiple doctors misdiagnosed Ralph, one physician sent a tissue sample out for a biopsy, which led to Ralph’s amyloidosis diagnosis. From there, a journey of self-education, empowerment, and treatment have helped him take on amyloidosis and keep living, despite the challenges of this difficult disease.    

Dan, a patient with AL amyloidosis, describes his journey to diagnosis. A once very active athlete, Dan found himself not able to do his favorite activities anymore. After 10-15 doctors misdiagnosed Dan with GERD, emphysema, and athlete's heart, he finally received the correct diagnosis of AL amyloidosis and started on the road to recovery.

James' only concerning symptom leading up to his diagnosis was bilateral edema. But, after a stroke, James spent a month in the hospital and received a surprising diagnosis of Wild-Type Transthyretin Amyloidosis. James shares his story and optimism just months after his diagnosis.

Despite having many of the "red flag" symptoms of amyloidosis, Cece still experienced a delay in diagnosis. Cece shares her story, how a genetic condition has impacted her family, and how a heart transplant changed her life.  

Greg Foster, 4-time world champion and Olympic Silver medalist, discusses his journey to diagnosis. Learn more about his initial symptoms, multiple doctors visits, and what drove him to continue pursuing an accurate diagnosis of AL Amyloidosis, despite being told he had Athlete's Heart.