How to Talk With Your Family About Your hATTR Amyloidosis Diagnosis? | oneAMYLOIDOSISvoice
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How to Talk With Your Family About Your hATTR Amyloidosis Diagnosis?

key information

source: ChangehATTR

year: 2019

summary/abstract:

Talking to your family members about your hATTR amyloidosis diagnosis is an important first step in your disease journey. You can help your family members understand your specific symptoms as well as the treatment options available to you. It’s also important for them to know that hATTR amyloidosis is passed down through family members (genetically inherited) and that they might be affected by the disease. Planning ahead can help make the conversation easier for you. Find some tips below to help guide your discussion.
 
Decide who you want to tell, and when:
These conversations can be difficult, so it is important to have them when you are ready. There is no one “right” way to talk to your family members. You can:
 
  • Talk to one, trusted family member and ask him or her to have the conversation with others
  • Meet with family members individually to discuss diagnosis
  • Have a “family meeting” to discuss the diagnosis
  • For your “family meeting” consider having a non-family member, therapist or support group member to attend to provide guidance and support
  • Ask your healthcare team to be there for the conversation.
 
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