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.
