Several factors influence survival time with familial amyloid polyneuropathy (FAP). Your healthcare team will consider:
• Your specific gene mutation
• Your age at diagnosis
• Whether you have heart involvement (cardiomyopathy)
• Stage of the disease
• Access to and response to treatment Without treatment, FAP typically Show Full Answer
Several factors influence survival time with familial amyloid polyneuropathy (FAP). Your healthcare team will consider:
• Your specific gene mutation
• Your age at diagnosis
• Whether you have heart involvement (cardiomyopathy)
• Stage of the disease
• Access to and response to treatment Without treatment, FAP typically progresses through three stages:
1. Early stage: Loss of sensory function in feet, progressing to legs and hands
2. Middle stage: Reduced mobility, often needing walking aids within 3-5 years
3. Advanced stage: Significant mobility loss, typically requiring wheelchair use after 10 years
However, modern treatments like liver transplantation and newer medications can significantly improve these outcomes by slowing disease progression, especially when started early. It's important to understand that survival estimates are averages and individual experiences can vary significantly. Early diagnosis, proper treatment, and following a heart-healthy diet can positively impact your outlook. New treatments continue to be developed, offering more hope for extended survival and improved quality of life.
September 22, 2025
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