Community Stories

Back in 2015, I went to see my primary care manager (PCM) several times because of fatigue and feeling feverish (when I didn't have a fever). My muscles and bones…

There are times when those afflicted with amyloidosis need assistance - a caregiver. In some instances, such as a stem cell transplant (SCT), the treatment is so…

Three years ago a dream came true. After years of trying, l was blessed to give birth to my son. Shortly after giving birth, I began to experience a series of…

ESPN's Jeremy Schaap was among those who received a text from Matt Millen on Dec. 23 that read, "It's on!" followed by a heart emoji. Millen, who had been…

I am writing to tell my story and help others. Everybody is different, but a terrible, incurable, fatal disease equalizes us all. There is wisdom and understanding…

When Manuel Rivera-Alsina, MD, first started feeling tired and short of breath, he blamed it on getting older. But when Manual, a maternal fetal medicine doctor,…

Millen's down around 50 pounds in the past year, chasing a cure for a disease called amyloidosis that is particularly evil. He needs debilitating chemotherapy now…

Dr. Jose Nativi is a cardiologist and director of the amyloidosis program at University of Utah Health Care and Huntsman Cancer Institute. He explains what…

In an interview with Rare Disease Report, Mathew Maurer, MD, Arnold and Arlene Professor of Cardiology at Columbia University, explained the standard of care and…

Much like multiple myeloma, the treatment landscape of immunoglobulin light chain (AL) amyloidosis is rapidly expanding with novel systemic therapies, says Michael…