How should you prepare for your first genetic counseling meeting after a cardiac amyloidosis diagnosis?
Great question! Since you've already had your cheek swab done, the genetic counselor will likely review those results with you during your phone meeting.
Here's how to prepare:
Before the meeting
- Gather information Show Full Answer
How should you prepare for your first genetic counseling meeting after a cardiac amyloidosis diagnosis?
Great question! Since you've already had your cheek swab done, the genetic counselor will likely review those results with you during your phone meeting.
Here's how to prepare:
Before the meeting:
- Gather information about your family's health history, especially any relatives with heart problems, nerve issues, or amyloidosis
- Write down any questions you have about your diagnosis, genetic risks, or what this means for your family members
- Consider inviting a family member or trusted friend to join the call for support and to help remember what's discussed
What to expect during the meeting:
The genetic counselor will explain your test results and help you understand if you have hereditary ATTR (hATTR) amyloidosis. They'll discuss:
- What your genetic test results mean
- Whether your family members might be at risk (parents, siblings, children have a 50% chance if you test positive for a mutation)
- How genetic information might guide your treatment options
- How to talk with family members about genetic testing
The counselor can also provide letters explaining the diagnosis that you can share with relatives if needed.
Remember, this is a supportive conversation designed to help you understand your condition better. There are no wrong questions!
March 20
Thank you for your input. Had the counseling which was a big bunch of nothing as it was for pretesting. The RN really had no helpful information.
March 31
When my cardiologist diagnosed cardiac amyloidosis (by CT and echocardiogram) he said I needed to have a genetic test. The purpose purpose was to determine if it was hereditary or "wild". He needed to know this to prescribe the proper treatment. There was never any "counselling"; it was another diagnostic tool. Perhaps I missed something.
March 31