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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Clara’s Journey
Read the full story →: Clara’s JourneyI am Clara, I am 32 years old, originally from El Salvador, but I live in California.I was diagnosed with amyloidosis laryngeal in January of 2021,…
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Amiloidosis por casualidad!
Read the full story →: Amiloidosis por casualidad!Mi nombre es Rocío , tengo 37 años y estoy diagnosticada de Amiloidosis por casualidad…. bendita casualidad!!! Yo sufro mucho de infecciónes de garganta o bien…
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Amy’s Disease aka Amyloidosis
Read the full story →: Amy’s Disease aka AmyloidosisI was diagnosed with Amyloidosis in 2018, age 52, following several years of visits for symptoms that couldn’t be explained. I knew something was wrong but…
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Mom’s Story
Read the full story →: Mom’s StoryIt began New Years Day of 2019, when my Mom had to have her gallbladder removed. Over the next few months, Mom lost around 70lbs and…
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Keep On Swimming
Read the full story →: Keep On SwimmingThe end of 2016 at the age of 49 a few things started to go wrong. Ridges on my nails, bruising easily, continual respiratory illnesses, nausea…
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Nacer en el lugar equivocado
Read the full story →: Nacer en el lugar equivocadoSoy Vianey, nací en la capital de Ecuador, tengo 46 años y durante más de 15 años tuve cuadros muy críticos de gripe, amigdalitis, traqueítis, bronquitis,…
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Mon amylose localisée
Read the full story →: Mon amylose localiséeAprès 3 ans de dysphonie, ma femme m’a poussé à aller voir un ORL. Puis tout s’est enchaîné très vite ensuite (ce qui m’a fait craindre…
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Clare’s Journey
Read the full story →: Clare’s JourneyPlease read my story below written by my children for my Just Giving page.I do have an update too – I have now completed my Stem…
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Mon histoire avec l’Amylose
Read the full story →: Mon histoire avec l’AmyloseC’est une histoire à vous couper le souffle, au propre plus qu’ au figuré. Celle du souffle vital qui vous quitte peu à peu sans que…
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Me, Myself and AL Amyloidose
Read the full story →: Me, Myself and AL AmyloidoseFebruari 2019 werd ik acuut op de CCU hartbewaking opgenomen. Na een aantal onderzoeken werd in eerste instantie gedacht aan pericarditis.
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My testimonial
Read the full story →: My testimonialQuando eu era criança lembro-me de visitar familiares por parte de pai, e percebi que alguns estavam muito doentes.
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Nurse going downhill fast
Read the full story →: Nurse going downhill fastIn 2013 I was working in a hospital as a nurse case manager in MICU and High Risk Nursery.
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.
