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.
