Generally, Amyloidosis is a very uncommon condition. And not all forms of amyloidosis are hereditary.Typically, families know when they have this because of similar symptoms and causes of death among blood relatives. However, new variants are still being discovered. So family history is a key indicator. If you know the country of origin of your family member who has/had amyloidosis, especially if they are Swedish, Japanese, Portuguese or Italian, there are research centers in those countries.
There are 2 tests for the hereditary version;
As to whether you should get tested, this is a very personal decision. If you suspect amyloidosis due to your family history, then you should start by getting your relative’s medical records. Then your local doctor, consulting with an amyloidosis reference lab, can conduct the necessary blood &
tests on blood relatives to determine if you have the amyloid protein variant. "Transthyretin", is the most common type of hereditary amyloid and is produced in the liver. Treatment would potentially include a liver transplant.
Reference labs in N. America are at Boston Univ., Memorial Sloan-Kettering in New York City, the Mayo Clinic in Rochester Minnesota and Indiana University School of Medicine Amyloid Research Group Department of Pathology and Laboratory Medicine. Outside the US, labs are at the Royal Free Hospital near London, University di Pavia Hospital in Italy, and Groningen University Hospital in the Netherlands have established amyloidosis practices. Contact details are on this web site under MEDICAL HELP.
Keep in mind, Amyloidosis is sufficiently uncommon that primary care physicians do not recognize when or how they must test for this disease. Seek the most experienced doctor you can. Privacy is a major issue and for those on private medical insurance, never let your insurance lapse after discovering you are at risk for this disease.