We hebben wat documenten opgesteld ter ondersteuning van u en uw familie bij deze gesprekken, met name als u en uw familie elkaar niet regelmatig spreken. De sjablonen en informatie kunnen echter ook nuttig zijn voor gesprekken met naaste familieleden. Dit zijn natuurlijk slechts ideeën die u kunt aanpassen aan uw individuele omstandigheden.
Please find below some suggested wording for an introductory letter/email or text message about hATTR amyloidosis, which you may find helpful when making initial contact with distant family members, particularly if you and your family are not in close contact.
This correspondence should be addressed to relatives who are related by blood − in other words, family members who may share the same gene. This includes first-degree relatives (parents, grandparents, children, brothers, sisters, aunts, uncles, and cousins) and may include members of the extended family (such as great aunts, great uncles and second cousins, but not ‘in-laws’).
Dear Philip,
This is Rosaline Callaghan and I’m your cousin. I’m contacting you because I’ve recently learned from my doctor that I have a rare condition that is hereditary (which means it runs in our family) among those who are related to me by blood. This may include members of our extended family, but not in-laws.
I can appreciate that you may have some questions. If you would like to know more, or to have a conversation about this, please do get in touch so that I can share some more information with you. I would be happy to email you or perhaps, we can arrange a time to talk on the phone or meet up.
I look forward to hearing from you.
Kind regards,
Rosaline