A person holding their stomach because of abdonial pain

ALys Amyloidosis

AL Amyloidosis

ATTR Amyloidosis

AA Amyloidosis

AApoA1 Amyloidosis

AGel Amyloidosis

AFib Amyloidosis

About ALys Amyloidosis

This is a very rare form of hereditary amyloidosis where a mutation in the gene for the lysozyme protein results in an abnormal, amyloid-forming protein. Lysozyme can be found all over the body, but is produced in the liver, gut and by some immune cells.

Lysozyme plays a role in fighting bacterial infection, however it’s usual role outside of that is not known. ALys amyloid deposits most commonly affect the kidneys, liver and gut.

ALys Amyloidosis Symptoms

Symptoms may vary in terms of how severely they affect each person, but most commonly are:

Chronic tummy (abdominal) pain
Problems with digesting food
Diarrhoea
Bleeding from the stomach and gut
Swollen feet and ankles (oedema)
Foamy or frothy urine
Fatigue
Bleeding from the liver

Sudden and severe bleeding from the stomach, liver and gut can be a life-threatening situation, so and early diagnosis and regular check-ups are important to prevent this from happening.

Diagnosing ALys Amyloidosis

ALys amyloidosis is a hereditary condition and so can be relatively quickly diagnosed if detailed family medical information is available. If one or more others in the family have or had similar symptoms, a genetic test can easily confirm the diagnosis.

Your doctor may want to take a biopsy to make sure that it’s is the ALys that is causing your symptoms and not some other disease. If you have no knowledge of your family’s medical history, then a biopsy, together with results from other blood and urine tests and scans will be needed to provide an accurate diagnosis.

Resources for All types of Amyloidosis...

Amyloidosis Alliance

Amyloidosis Research Consortium (ARC)

Cardiomyopathy UK

NHS Amyloidosis Information

One Amyloidosis Voice

Symptom tracker app (STAR)