Resources

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.

Isabelle Lousada, Vaishali Sanchorawala, Angela Dispenzieri, Kristen Hsu, Robyn Himick, Preston Dunnmon, Mathew Maurer. International Society of Amyloidosis, Annual Meeting 2020

Lousada and The Inaugural Amyloidosis Forum Panelists, Orphanet Journal of Rare Diseases (2020) 15:268

In this patient webinar, Mayo Clinic's occupational therapist Sarah Dahlhauser, OTD, OTR/L, and physical therapist Sarah Boyd, PT, DPT, discuss exercise principles for maintaining mobility and function, and home modifications for improved safety for amyloidosis patients.

ARC's comprehensive European Health Technology Assessments (HTA) Toolkit was produced to give information about how treatments are evaluated and approved for use in the various member state healthcare systems. The Toolkit guides patients and patient groups on how they can participate in the process to ensure that those treatments that are developed for their amyloidosis can be made available in their countries.