Managing TRANSTHYRETIN (TTR) AMYLOIDOSIS
TTR amyloidosis is a progressive condition caused by misfolded transthyretin proteins depositing in organs—most commonly the heart and nerves. There are two main types:
Hereditary ATTR (hATTR): Caused by a genetic mutation in the TTR gene. It often affects the heart, nerves, and kidneys.
Wild-type ATTR (wtATTR): A non-genetic, age-related form that primarily affects the heart and sometimes the nerves.
General Tips for Both Types
Stay Informed: Understanding your specific diagnosis helps you make empowered decisions.
Track Symptoms: Keep a journal of fatigue, swelling, numbness, or shortness of breath to share with your care team.
Medication Adherence: Therapies like Amvuttra can help stabilize or reduce TTR protein production—take them consistently.
Heart Health: Follow a low-sodium diet, monitor fluid intake, and use diuretics as directed to manage heart failure symptoms.
Neuropathy Support: If nerve involvement is present, ask about medications for pain and mobility aids.
Genetic Counseling: For hATTR, encourage family members to get screened.
Regular Monitoring: Schedule routine cardiac imaging, neurologic assessments, and lab tests to track disease progression.
Tips for Hereditary ATTR (hATTR)
Family Screening: Relatives may carry the same mutation—early detection can improve outcomes.
RNA-based Therapies: Gene-silencing treatments like Amvuttra can reduce TTR production—ask your provider if it’s appropriate.
Liver Transplant Consideration: In rare cases, this may be an option to halt mutant TTR production.
Tips for Wild-Type ATTR (wtATTR)
Age-Related Monitoring: wtATTR often affects older adults—watch for subtle signs of heart failure or arrhythmias.
TTR Stabilizers: Commonly used to slow progression by stabilizing the TTR protein.
Fall Prevention: If balance or strength is affected, consider physical therapy and home safety evaluations.
Lifestyle & Emotional Wellbeing
Stay Active: Gentle exercise like walking or swimming can support circulation and mood.
Mental Health: Chronic illness can be isolating—seek support groups or counseling.
Care Coordination: Work with a multidisciplinary team—cardiologists, neurologists, geneticists, and pharmacists.
Questions to Ask Your Provider
What type of TTR amyloidosis do I have?
What organs are affected in my case?
Which medications are best for my type?
Should my family be tested?
What symptoms should prompt urgent care?