Kidneys in red inside a blue wireframe body

AFib Amyloidosis

AL Amyloidosis

ATTR Amyloidosis

AA Amyloidosis

AApoA1 Amyloidosis

AGel Amyloidosis

ALys Amyloidosis

About AFib Amyloidosis

Fibrinogen is the precursor protein in this type of amyloidosis which mainly affects the kidneys. Fibrinogen is produced in the liver and plays an important role in blood clotting, inflammation and wound healing. AFib amyloidosis is a hereditary condition – it is caused by variants in the fibrinogen gene that result in the liver making abnormal fibrinogen that misfolds and forms amyloid. This variant or mutation may be passed down in families from parent to child.

AFib Amyloidosis Symptoms

Because AFib amyloidosis mainly affects the kidneys the symptoms that patients first experience are related to kidney dysfunction. The main ones are:

Swollen feet and ankles (oedema)
Foamy or frothy urine
Fatigue
Low blood pressure
Nausea and vomiting
Dry and itchy skin
Muscle cramps
Loss of appetite

Diagnosing AFib Amyloidosis

Because kidney problems are usually the first manifestation of the condition, your doctor will want to perform a kidney biopsy and examine the kidney tissue under a microscope to look for amyloid deposits. Once amyloid deposits are seen, further tests must be done on the tissue sample to identify exactly what type of amyloidosis you have.

However, if there are other members of the family who have had similar problems, or who have been diagnosed with type of amyloidosis, you’ll have a genetic test to see if you carry the genetic variant, and this might be sufficient to confirm the diagnosis of AFib

Treating AFib Amyloidosis

At present there are no medicinal treatments for AFib amyloidosis. Because the liver is the only source of the abnormal fibrinogen protein, liver transplantation is at present the only successful treatment for this condition, provided the procedure is done before the kidneys sustain significant and irreversible damage.

When kidney function becomes significantly impaired you will be started on dialysis until a kidney transplant becomes possible. At this stage a combined liver and kidney transplant is the only way forward – if the liver is not replaced it will simply continue to make abnormal fibrinogen and amyloid will deposit in the new kidney and it too will eventually fail.

Resources for All types of Amyloidosis...

Amyloidosis Alliance

Amyloidosis Research Consortium (ARC)

Cardiomyopathy UK

NHS Amyloidosis Information

One Amyloidosis Voice

Symptom tracker app (STAR)