"Some day this disease will be considered a treatable nuisance"
-- Dr. Vescio from Cedars Sinai

USA Support Groups

Events Calendars



Home Page

Upcoming Events

About Us

Contact Us

Patient & Care Giver Resources

Medical Links and Clinical Trials

Awareness Items & Donations

Fundraising Events

Awareness

Patient's Day

Survivor Stories

In Memoriam



Arizona/Southwest
(Phoenix)


Carolinas (Charlotte)

Florida (Jacksonville)

Florida (Tampa)

Georgia/Alabama

Indianapolis/Chicago

Kansas City

Maryland (Baltimore/D.C.)

Maryland (Hagerstown)

Massachusetts (Boston)

Nevada (Las Vegas)

New York City

New York (Rochester)

Michigan/Ohio

Ohio/PA

Pacific Northwest (Portland)

Philadelphia

Rocky Mountains (Denver)

Southern California (L.A.)

Texas (Dallas)

Upper Mid West/Minnesota


Canada

Australia

United Kingdom


Support Group Tips

Entering a New Era of for Patients with Amyloidosis
By Dr. Angela Dispenzieri, Mayo Clinic

Before speaking directly to discussion of the new 'era,' I would like to acknowledge Muriel Finkel, the president of the Amyloidosis Support Groups, for her seemingly boundless energy and dedication to trying to improve the world for patients with amyloidosis and their families. Efforts like hers and other members of her organization make a difference both on an individual level and on a larger scale. By increasing awareness about diseases that can potentially cause great harm, progress follows. Although not every patient with amyloidosis will have the very best outcomes, more and more are attaining both hematologic and clinical responses as well as prolonged survival.

In the relatively short time that I've been working in this field, much progress has been made. First, there is a heightened (although not yet sufficient) awareness of amyloidosis, such that more diagnoses are being made earlier. Second, newer technologies have become available to more easily distinguish one type of amyloidosis from another. This is very important because AL amyloidosis (the type that originates from the bone marrow-also called primary) is treated very differently from the inheritable forms (which most commonly originate from the liver). Third, readily available treatments have improved significantly for patients with AL amyloidosis. Four, riding on the coat-tails of a sister disease, called multiple myeloma, new and potentially more effective drugs are moving into the treatment armamentarium for patients with AL amyloidosis. Five, collaborations among world experts in the field of amyloidosis are growing, which should hasten advances for our patients. Six, insights into the pathogenesis of AL amyloidosis are slowly emerging, but more research will be required to unlock the mysteries of this potentially devastating disease.

In years past, many physicians would offer patients with the diagnosis of AL little to no hope. That philosophy should be discarded. Of course, there are unhappy endings to too many patients' stories; however, that number is diminishing, and our goal is to bring it to zero. Our work is not done but with hard work, people like you and Muriel, research dollars, and a little luck we will achieve our goal.



Amyloidosis Support Groups
AmyloidosisSupport.com
1-866-404-7539 TOLL FREE USA