Amyloidosis is the name for a group of rare, serious conditions caused by a build-up of an abnormal protein called amyloid in organs and tissues throughout the body.
The build-up of amyloid proteins (deposits) can make it difficult for the organs and tissues to work properly. Without treatment, this can lead to organ failure.
This page focuses on AL amyloidosis (previously known as primary amyloidosis), which is the most common type, and on ATTR amyloidosis, which is now being diagnosed much more frequently than in the past.
You may also need special medication if you have dialysis if you have end stage kidney failure.
Some people with kidney failure may be suitable for a kidney transplant, although the underlying problem with your bone marrow will need to be treated using chemotherapy to prevent a build-up of amyloid in the new kidney.
After chemotherapy, you'll need regular check-ups every 6 to 12 months to look for signs of the AL amyloidosis returning (relapsing). If you do relapse at any stage, you may need to start chemotherapy again.
Diagnosing AL amyloidosis
Diagnosing AL amyloidosis can be hard, as the symptoms are often vague and not specific.
A small tissue sample (a biopsy) can be taken from the affected part of your body. Your doctor will talk to you about how this will be done.
The biopsy will be examined under a microscope in a laboratory to see if there are any amyloid deposits in it.
You may also have other tests to assess how the amyloid deposits have affected your individual organs.
taking a sample of your bone marrow
a heart ultrasound scan (an echocardiogram) to check the condition of your heart
various different blood tests to look for damage to your heart, kidneys or other organs
a MRI scan to check the health of different organs in your body
This involves being injected with a small amount of a radio-labelled blood protein called serum amyloid P component (SAP) before being scanned with a special camera that detects the radioactivity.
The radio-labelled protein sticks to any amyloid deposits in your body, which highlights the areas of your body that are affected.
ATTR amyloidosis is caused by amyloid deposits from abnormal versions of a blood protein called transthyretin (TTR).
ATTR amyloidosis can run in families and is known as hereditary ATTR amyloidosis. People with hereditary ATTR amyloidosis carry mutations in the TTR gene.
This means their bodies produce abnormal TTR proteins throughout their lives, which can form amyloid deposits. These usually affect the nerves or the heart, or both.
Another type of ATTR amyloidosis isn't hereditary. This is called wild type ATTR amyloidosis, or senile systemic amyloidosis. In this condition, the amyloid deposits mainly affect the heart and can also cause carpal tunnel syndrome in some people.
Hereditary ATTR amyloidosis may cause symptoms at any age from about the age of 30. The symptoms of wild type ATTR amyloidosis usually only appear after around the age of 65.
In recent years, as a result of new imaging techniques it's become apparent that wild type ATTR amyloidosis may be far more common than thought.
ATTR amyloidosis can be diagnosed by:
taking a sample of the affected tissues (tissue biopsy)
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