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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Mi marido Sergio, un guerrero
Read the full story →: Mi marido Sergio, un guerreroEn el año 2011, con 41 años y un niño de 3 años y una niña de 1 año y medio mi marido Sergio fue diagnosticado…
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De diagnose (Amyloidose) zet ons leven na een zoektocht van 2 jaar op stil
Read the full story →: De diagnose (Amyloidose) zet ons leven na een zoektocht van 2 jaar op stilIn 2017 begonnen de problemen met wondroos en daarna half mei een ziekenhuisopname door hoge koorts (erysipilas) en daardoor een hartinfarct in eerste instantie niet door…
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Amy and me and Argentina
Read the full story →: Amy and me and ArgentinaI am doing a « virtual run » for the Amyloidosis Foundation. I recently posted the Introduction to my journal during this run.
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AL-Amyloidose
Read the full story →: AL-AmyloidoseOp 17 april 2018 vond ik dat ik dikke enkels had. Naar de huisarts, urinetest en teveel eiwit. Nogmaals urinetest en weer veel te veel.
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Long day’s march to clarity
Read the full story →: Long day’s march to clarityMy father was diagnosed with hattr in the late 70’s and died a couple of years later – at the time I was 12 years old,…
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Med hjärtat för livet
Read the full story →: Med hjärtat för livetHi. My name is Inger S. and I was born in 1956 and I live in Piteå which is in northern Sweden. It all started in…
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My Family’s AmyloStory
Read the full story →: My Family’s AmyloStoryMy mom, Gayle L. B., was diagnosed with Amyloidosis the summer of 2008.
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Decoding Rough Data
Read the full story →: Decoding Rough DataWe all make mistakes, and we can learn from them. I don’t like to make them if it could severely effect other people, and in this…
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A Minha Historia
Read the full story →: A Minha HistoriaA Minha Historia não é muito diferente de todas as outras que, são diagnosticados com esta doença, surge num momento em que estas a começar a…
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A Strange Voyage called MM&AL
Read the full story →: A Strange Voyage called MM&ALI live in the one beautiful old country, located at the intersection of Eastern Europe and Western Asia. It is a part of the Caucasus region,…
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Amyloidosis: Our family’s curse
Read the full story →: Amyloidosis: Our family’s curseHi! My name is Amanda Wang (nee, Boyd). I am 38 years old; originally from a very small town in Manitoba, Canada; have been married for…
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The Last Journey
Read the full story →: The Last JourneyOf all the journeys we planned for our bright future, crisscrossing the globe to foreign and familiar lands, we never thought that this Malevolent protein would…
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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.
