Facts

A is for … Amyloidosis

Clear information on the main amyloidosis diseases, including symptoms, diagnosis, treatments and FAQs.

Facts

What is Amyloidosis?
AMYLOIDOSIS is a term that represents several different types of diseases where an abnormal protein called amyloid is produced. These amyloid protein fibers can attach and deposit into organs, tissues, nerves and other places in the body. When that happens, normal function of the area can be affected. As the amyloid protein increases, health problems and organ damage may occur. “OSIS” means increased, or an abnormal, supply of AMYLOID protein.

Most of the amyloidosis diseases have different treatments; therefore, the correct diagnosis is extremely important.

Types of Amyloidosis
When amyloid clusters together, it can be in several places in the body at the same time. This is called Systemic. If it gathers in one specific area of the body only, it is called Localized.

There are several different types of amyloid proteins. When discussing the various types, the “A” stands for Amyloid. What follows the “A” is what defines the specific type of amyloid protein involved. For example, these are the three most common Systemic Amyloidosis diseases:

AL – A is for amyloid. L is for Light Chain

AA – A is for amyloid. A is for Serum A Protein (also known as SAA)

ATTR – A is for amyloid. TTR is for Transthyretin (also known as TTR) protein.

There are other types of amyloidosis diseases as well, which will be outlined on this website.

Go directly to your amyloid type here, and find our specific information on symptoms, diagnosis and treatments for your type.

A Rare Disease

Amyloidosis has been labeled as a rare disease by the U.S. Office of Rare Diseases (ORD), which is a segment of the National Institutes of Health (NIH). It is also referred to as an “orphan” disease. As a classified rare disease by the U.S. government, this means that it is estimated that all of the types of Amyloidosis combined affects less than 200,000 people in the U.S. population.

As research continues, this rare classification may change. Many experts suspect that some of the amyloidosis diseases are not that rare — just rarely diagnosed. As funding increases for research, our understanding of the amyloid diseases will lead us in new directions.

A major challenge is the current lack of early diagnosis for a patient with amyloidosis. This is a key factor. Awareness of all the amyloidosis diseases by the medical community and by the general public is essential in order to turn this around.

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