Amyloidosis, hereditary, transthyretin-related

Healthcare/Doctors

How do I find a specialized center for hereditary transthyretin amyloidosis?

The best way to obtain the most accurate, current, clear, and comprehensive information on hATTR amyloidosis is to be seen at an Amyloidosis Treatment Centers. These are genetic centers that specialize in the treatment of patients with amyloidosis. At most centers, you will see a medical geneticist, genetic counselor, nurse and other specialists who work as a team to answer your questions, discuss testing, identify your at-risk family members, and develop a comprehensive evaluation and treatment plan for you. A Center will work with your current doctors to organize the treatment, tests, and specialists you need.

Support groups may have information about specialists with expertise in treating people for hereditary transthyretin amyloidosis. These include the Amyloidosis Foundation (http://www.amyloidosis.org/resources/#treatment-centers) and Amyloidosis Support Groups (http://amyloidosissupport.org/index.html).

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What doctors do I need to see to manage and treat hereditary transthyretin amyloidosis?

What doctors do I need to see to manage and treat hereditary transthyretin amyloidosis?

Rare diseases that affect multiple organ systems like hATTR amyloidosis can benefit from a multidisciplinary approach. This approach involves different healthcare professionals with specialized skills and expertise. They work together to make treatment recommendations and to provide quality care of individuals and families. Depending upon the specific symptoms in an individual multidisciplinary team may require:

  • A specialist for neurological disorders (neurologist), who will monitor the function and health of the central, peripheral and autonomic nervous systems
  • A heart and blood vessel doctor (cardiologist), who can monitor heart function and health
  • An eye doctor (ophthalmologist), who can monitor and treat eye problems
  • A specialist in digestive disorders (gastroenterologist), who can treat problems of the gastrointestinal system
  • A genetic counselor, who can help people understand the disease and the implications for the person and other family members
  • A child behavior specialist
  • A metabolic disease specialist

Talk to your doctor about the best specialists in your area to follow an individual with hATTR amyloidosis. Support groups may have information about specialists with expertise in treating people for hereditary transthyretin amyloidosis. These include the Amyloidosis Foundation (http://www.amyloidosis.org/resources/#treatment-centers) and Amyloidosis Support Groups (http://amyloidosissupport.org/index.html).

References

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