It can be isolating if one does not reach out to others in a similar position. I have found fabulous support and encouragement from the writing community.
Rosaline is a writer and poet, and shares her Derry home with her rescue cat, Beannacht, Irish for Blessing. She’s a retired barrister also living with Hereditary Amyloidosis, a rare, fatal disease originating in North-West Donegal, for which there was no treatment until recently. Rosaline has written a book on her family’s experience of Donegal Amy: A Rare Disease from Ireland. It is available through her website wildstoryteller.com.