We have created some documents to support you and your family with these conversations, particularly if you and your family are not in close contact. But you may also find the templates and information useful when thinking about how you communicate with close relatives. Of course, these are just ideas that you may want to adapt to suit your personal circumstances.
We have developed a template letter/email with optional wording and talking points. You can use it to help express your support for member of the family after genetic testing has confirmed the transthyretin (TTR) gene mutation.
The aim in sending this correspondence is to:
Dear [insert family member name],
Thank you for letting me know about the results of your genetic test – I am very sorry to learn that you also have the transthyretin (or TTR) gene mutation and understand that it must be a troubling time for you. Our family is here to support you in any way we can, by sharing our experiences, helping to answer your questions, and offering practical support.
There are also many resources available for families with this condition. The Amyloidosis Alliance has a reliable website (https://www.amyloidosisalliance.org/hereditary-transthyretin-amyloidosis) and provides links to other local support groups across the world.
Don’t hesitate to call if you would like to talk. I would be happy for us to meet up or have a chat on the phone. My phone number is [add a phone number].
I look forward to hearing from you.
Kind regards,
[Insert name/signature]
NP-CEMEA-00110 August 2021