“From Symptoms to Diagnosis to Treatment: A Patient’s Journey with Amyloidosis.”
On Monday, Nov. 9 at 6 p.m. ET, join a special live webinar to hear the raw and unedited story of Gregg, one of the patient speakers from the Amyloidosis Speakers Bureau, who will share their personal journey with AL amyloidosis — from symptoms, through diagnosis, treatment, and life today battling a rare and incurable disease. There will be a live Q&A at the end.
As an added incentive to attend, the organizers will be randomly selecting four attendees to each receive a $25 Amazon eCard, courtesy of the Amyloidosis Speakers Bureau.
In advance of the webinar we suggest all attendees watch a 10-minute video developed by medical experts which offers a brief introduction to the disease, as this will not be covered by the speaker.
“Amyloidosis Awareness (narrated by Michael York)”
In addition, one of our amyloidosis advisors, Dr. J. Mark Sloan from Boston University, has provided an excellent presentation on “Diagnosing Amyloidosis: From Cardiology to Neurology” you may find informative.
Amyloidosis is the buildup of a protein called amyloid in the body’s tissues or organs. Amyloid isn’t normally found in the body, but it can be formed from several different types of protein. Amyloid proteins 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. Depending on the type of amyloidosis (AL, ATTR wild-type, hATTR, etc.), amyloid can deposit in the heart, kidneys, nervous system, spleen, digestive tract, or other organs and soft tissues. Severe amyloidosis can result in life-threatening damage to these organs or even failure.
Amyloidosis is not well known; however, there is a belief within the medical community that this disease is not as rare as once thought. Instead, it is underdiagnosed or diagnosed when it is too late to make a difference. The complexity of this disease makes diagnosis one of the biggest challenges affecting patient lives. It is not uncommon to hear from patients that it took multiple years and multiple doctors to ultimately arrive at a correct diagnosis, all the while the disease continued to progress.
The Amyloidosis Speakers Bureau (ASB) is an initiative focused on educating the next generation of doctors during medical school about this disease through presentations from amyloidosis patients and materials by expert medical advisors. They believe this will translate to a heightened awareness of the disease, arriving at an earlier diagnosis and start of treatment, and in the end, improve patient survivorship. For more information about the ASB, visit the Mackenzie’s Mission Speakers Bureau.
WHEN: Monday, Nov. 9, at 6 p.m.
WHERE: Zoom
-Submitted to Presence; Hosted by American Academy of Family Physicians-Family Medicine Interest Group