Up until two weeks ago, I had never heard of amyloidosis.
I am learning a lot about it now because I was diagnosed with having it after a liver biopsy.showed an excess presence of amyloid protein.
Up until 20 years ago, very little was known about the disease. Even now, researchers are only just discovering the many forms in which the disease presents.
In very simple terms, the protein amyloid is produced in excess in bone marrow. The excess amyloid is carried by blood throughout the body and can build up in organs like the heart, liver, kidneys, skin, nervous system. The excess amyloid will eventually lead to those organs losing functionality to the point of failure.
Depending on which organs are effected, symptoms for sufferers will vary greatly. In decades past, problems with the heart, liver or kidneys were not tested for the presence of amyloid.
Treatment now centres around managing the affected organ. This could mean transplants, corrective surgery, dialysis, chemotherapy, etc.
A definitive diagnosis can not usually be made without a biopsy. The liver, kidneys and bone marrow are fairly easy to do, the heart is much harder.
I would urge anyone that suddenly experiences extreme changes to the aforementioned organs in later life (I am seventy) to consider being tested for amyloidosis.
Up until recently, I had been healthy all my life, no operations, not on any medications and rarely missed work because of illness.
The causes for this disease are not yet fully understood. In some cases it can be hereditary, in others it can be triggered by diseases such as malaria, dengue fever, hepatitis, rheumatoid arthritis, etc.
In the last seven days, I have undergone CT scanning, MRI, Echo cardio gram and ECG, bone marrow biopsy, neuclear scanning top to toe, Tomorrow I will be seeing a neurologist.
As yet, I do not have a definitive diagnosis of exactly which type of amyloidosis I have. I will be seeing one of Australia’s foremost specialists on amyloidosis very soon. That is when I should find out which type of amyloidosis I have and how I will be treated.
I believe the disease is only detected in eight people in every million, (about 299 in Australia every year).
.I am sharing my experience in the hope that more people become aware of the disease and that more can be done to diagnose it and treat it.
Just to finish, my early symptoms, were unexplained briusing, dermatitis, loss of muscle tone, excess bleeding from nicks and scratches, unexplained high numbers in liver function test.(I did not drink much alcohol before and I drink none now at all.
