Plain Language Summary
What is this summary about?
This is a plain language summary of an article originally published in European Journal of Human Genetics. Transthyretin amyloidosis (ATTR) is a disease that affects the heart and nerves of those it afflicts. One inherited form of ATTR is particularly common among people of Portuguese descent and presents primarily as a neurologic disease termed familial amyloid polyneuropathy (FAP).
What were the results?
This study showed the relevance of communication from older to younger generations, primarily women, among Portuguese families with FAP. There were 4 major patterns of communication, which were in general supportive and informative. This study suggests opportunities for healthcare providers to help their patients regarding communications of inherited diseases within their families.
What do the results mean?
This study showed the benefits of positive intergenerational communications when discussing inherited diseases in families.
Tweetable abstract
By their example and behavior, older generations can influence younger generations by contributing to how they understand and will manage inherited familial amyloid polyneuropathy, a hereditary progressive disease that has its higher prevalence among people of Portuguese descent.
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Link to original article here
Financial disclosure
The development of the PLSP was funded by an educational grant (GR-TTR-23-1100) from Alnylam Pharmaceuticals. Á Mendes acknowledges funding from the FCT – Fundação para a Ciência e Tecnologia (CEECIND/02615/2017). The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.
Writing disclosure
Medical writing support was provided by Mukund Nori, PhD, MBA, CMPP and Anushree Srivastava, MS of rareLife solutions (CT, USA) and funded by an educational grant (GR-TTR-23-1100) from Alnylam Pharmaceuticals.
Acknowledgments
The authors are indebted to all the participants in this study, for sharing their time and experience. The authors thank the APP, especially to Sandra Costa, for help in the recruitment of the participants.
Competing interests disclosure
The authors have no competing interests or relevant affiliations with any organization or entity with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.