What a heartbreaking and deeply personal situation — and what a devoted child you are for piecing this together. The symptoms shared between you and your father are striking, and your instincts absolutely deserve to be taken seriously.
To answer your question: AL amyloidosis itself is generally not considered hereditary Show Full Answer
What a heartbreaking and deeply personal situation — and what a devoted child you are for piecing this together. The symptoms shared between you and your father are striking, and your instincts absolutely deserve to be taken seriously.
To answer your question: AL amyloidosis itself is generally not considered hereditary. However, the symptoms you're describing — especially the combination of heart involvement, nerve issues, digestive problems, and the pattern shared with your father — could point toward hereditary ATTR (hATTR) amyloidosis rather than AL amyloidosis. It's worth raising this possibility with your care team. Hereditary ATTR amyloidosis is caused by a gene mutation that can be passed from parent to child. If a parent carries the mutation, each child has a 50% chance of inheriting it. The symptoms can closely mirror what you've described.
Key facts about hereditary ATTR amyloidosis:
- It affects the heart, nerves, and digestive system
- It can cause numbness, dizziness, fainting, and bowel issues
- It is diagnosed through genetic blood testing to identify specific gene mutations
- A biopsy alone won't identify the gene mutation — a separate blood test is needed
- It is more common in African Americans in the U.S., as well as people of certain European backgrounds Given your family history, it would be worth strongly advocating for genetic testing with your doctor. If your current doctors have limited knowledge of amyloidosis, seeking a specialist at an amyloidosis center of excellence could be a game-changer. These specialists see this condition regularly and are far better equipped to guide testing and treatment.
Your father deserved answers, and so do you. Don't stop pushing. 💙
August 1
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