Amylostory
Your story is unique
Amyloidosis invades lives and turns them upside down. Sharing yours will help someone. Here, everyone is free to talk about their life with the disease, in their own words and in their own language.
Browse the stories
People all connected by amyloidosis
Behind every statistic is a person. Each story below was written by a patient or a caregiver and is published in the language it was written in.
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Refined
Read the full story →: RefinedI am a 43 year old, wife and mother who is currently living with ATTR. My gene mutation is ALA60, the one that goes after the…
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My Amyloid Journey
Read the full story →: My Amyloid JourneyMy name is Julie, and I am 55 years old, I work as aAdministration officer in my local hospital.
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Soy una extraña
Read the full story →: Soy una extrañaHola, me llamo Adriana Briones. Para ti soy una extraña.Tengo Amiloidosis Hereditaria y si, también es extraña…
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John’s Journey
Read the full story →: John’s JourneyMy husband John M. was diagnosed on Feb 5, 2021 with AL Amyloidosis affecting the heart. After a year of complaining of shortness of breath.
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My Story
Read the full story →: My StoryWe hadn’t even heard of this illness before hand, shortly after mummy’s death I started to feel unwell it started with really sore buttocks to the…
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The Importance of Early Diagnosis
Read the full story →: The Importance of Early DiagnosisMy name is Jason Conway and I am a husband, father, and a teacher. I am 50 years old and have lived a normal, healthy life.…
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Une histoire de famille
Read the full story →: Une histoire de famillePapa est tombé malade au début de sa retraite dans les années 70 . On ne comprenait rien à sa maladie que les médecins ne connaissaient…
Be the link
Share your story
Your account of the disease (how long it took to be diagnosed, what helped, what did not) is what makes the next patient’s road shorter. Write it in whichever language you are comfortable with.
