Amyloidosis is a “group of diseases” that have the common feature where abnormal proteins (or in some cases normal proteins) behave abnormally, and the breakdown product of these proteins fold upon themselves, creating amyloid” fibrils.” Amyloid fibrils may affect only a single organ or, often, are spread throughout the body. They can affect different organs in different people, and there are different types of amyloid proteins, making this complex disease often elusive to diagnose. Severe amyloidosis can result in life-threatening damage to these organs or even failure. This overview offers a brief summary of this complex disease.
In this special video, hear world-renowned expert Dr. Mathew S. Maurer and his patient John Basdavanos presenting to a group of medical students. Dr. Maurer provides a brief overview of Wild-Type Amyloidosis (ATTRwt), while John provides the patient perspective. Together, these insights offer a compelling story about battling a life threatening disease.
It’s been a wonderful year, closing our our second full school year since our launch. Since we began two years ago, we have made over 110 presentations to over 5,600 first/second year medical students. Feedback confirms that our patient speakers do a great job educating future doctors on the patient perspective of navigating a rare disease! We invited you to read more about what we’ve accomplished so far in 2021.
Are you wondering what diet to follow after a diagnosis of AL Amyloidosis? With so many unknowns and what-ifs, it is a scary and overwhelming time. Guest writer Lori Grover, herself an Amyloidosis survivor, provides helpful insights into healthy eating. So much is out of your hands as you wait for test results and treatment […]
The scientific world is abuzz … a Nobel Prize-winning technology called CRISPR/Cas9 can now edit our DNA. This programmable gene-editing technology, which is efficient, precise, and scalable, has inspired a gold rush of countless applications in medicine, agriculture and basic science. In this blog we invite you to read more about this ground-breaking advance and how, with one course of treatment, it could potentially cure hereditary transthyretin (hATTR / ATTRv) amyloidosis.