Amyloidosis
More education/awareness needs brought to attention to the medical field. Actually, not just the medical field, but the public as well - M Michalski
image by: Amyloidosis Foundation
HWN Suggests
My Battle with AL amyloidosis
I live in Toronto, Ontario and have AL amyloidosis with multiple organ involvement.
I am currently in a clinical trial and I’m happy to say that I’m doing well. I am one of only 260 people worldwide receiving this treatment; which I believe has given me my life back. I want my story to bring some much needed awareness to this horrible disease, and hope to those who are newly diagnosed.
My symptoms presented themselves over time and in strange ways. I’m not even really sure when it all started. It’s a slow, progressing disease and it can take years before any symptoms show. I began noticing symptoms in 2014, tingling in my hands, changes in my migraines (they became more frequent),…
Resources
I am Thankful for this Journey
We finally had a confirmed AL amyloidosis with cardiac involvement diagnosis. From the PCP referral to confirmation of amyloidosis, it was about four months! Knowing what I know now, most people go longer, even years before given a proper diagnosis. I am blessed.
What is amyloidosis and 10 signs you might have it
Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and digestive tract. It is often overlooked because it may cause no symptoms at first. And when there are signs or symptoms, they can look like those of more-common diseases. There’s no cure for amyloidosis and severe amyloidosis can lead to life-threatening organ failure. But treatments can help you manage your symptoms and limit the production of amyloid protein.
Leading efforts to better understand amyloidosis diseases
Twenty years ago, I was given little hope of surviving. I was one of the first patients to undergo a stem cell transplant for AL amyloidosis. Unlike many patients, I survived the treatment. Most patients aren’t so fortunate. And so, in 2015, I founded the Amyloidosis Research Consortium (ARC) to address the barriers that are delaying the evaluation of novel therapies for this group of amyloidosis diseases.
Research into amyloidosis
Amyloidosis is a serious condition that can lead to problems with the heart and other organs. Now BHF research is discovering that it might be more common than previously thought, as Sarah Brealey explains.
After amyloid failures, it’s time to take a new tack for treating Alzheimer’s
If insanity is doing the same thing over and over again but expecting different results, then the last decade or so of Alzheimer’s disease drug development has been insane. Three carefully designed, well-executed, and fully resourced trials targeting amyloid protein in the brain as the cause of Alzheimer’s disease have failed. It’s long past time to take a new approach to this mind-robbing disease.
Relaxin' in the Amyloid Oasis
Well, after 33 blood tests since the start of the year, a liver MRI and an upper endoscopy, it turns out I have a rare blood disorder called Primary Amyloidosis. Only about 3,000 new cases are diagnosed in the US every year. Basically, from what I understand, my bone marrow is soooo incredibly awesome that its producing antibodies that my body cannot break down.
Think Like a Doctor: A Green Heart Solved
Amyloidosis is rare. It’s a diverse group of diseases that all feature deposits of a substance known as amyloid — tightly packed strands of proteins — that can infiltrate virtually any tissue of the body. The strands, called fibrils, are inert but cause disease by disrupting the normal structure and function of the organs.
With promising results from emerging therapies, research yields hope for amyloidosis
Immunoglobulin light-chain amyloidosis (AL) is a rare, life-threatening disease that occurs when toxic proteins build up in organs, which alters their normal function. The most commonly affected areas include the heart, kidneys, liver, nervous system, and gastrointestinal tract.
Is the Leading Theory About Alzheimer's Wrong?
Yet another failed drug trial has prompted soul-searching about the “amyloid hypothesis.”
My Battle with AL amyloidosis
I live in Toronto, Ontario and have AL amyloidosis with multiple organ involvement. I am currently in a clinical trial and I’m happy to say that I’m doing well. I am one of only 260 people worldwide receiving this treatment; which I believe has given me my life back. I want my story to bring some much needed awareness to this horrible disease, and hope to those who are newly diagnosed.
Mackenzie’s Mission
The “typical” amyloidosis patient is a 50 to 75-year-old male with multiple organs involved, whereas Mackenzie was a 23-year-old female with no organ involvement whatsoever.
Amyloidosis Foundation
Supporting patients while promoting research, education and awareness.
Amyloidosis Research Consortium
ARC is accelerating the development of and access to new and innovative treatments for systemic amyloidosis.
hATTR Change the Course
hATTR Change the Course creates a supportive hATTR amyloidosis community – connecting patients, caregivers, advocates, and healthcare professionals.
Hereditary ATTR amyloidosis
Hereditary ATTR amyloidosis is a rapidly progressive disease that may eventually rob patients of function—and their lives.
International Society of Amyloidosis
The aims of our Society are to promote education, clinical studies research, including diagnosis and treatment, conferences and symposia on all aspects of amyloidosis worldwide.
Your Heart’s Message
Your Heart's Message is an online community dedicated to providing education on ATTR-CM (transthyretin amyloid cardiomyopathy) to help inform patients and their caregivers and provide resources to facilitate earlier diagnosis.
Amyloid Planet
Perspectives on amyloidosis and protein misfolding disorders.
Amyloidosis Center
The Amyloidosis Center at Boston University School of Medicine and Boston Medical Center is recognized internationally as a leader in basic and clinical research on amyloidosis and related diseases.
Amyloidosis Support Groups
We hope you will find everything you need to know about what is happening in the world of support and awareness for Amyloidosis patients, care givers and those who have lost some one to this insidious disease.
Canadian Amyloidosis Support Network
The Canadian Amyloidosis Support Network, Inc. is a not-for-profit, all volunteer organization, formed by amyloidosis patients and family members of amyloidosis patients. Our Support Network refers to our commitment to making a positive difference in the lives of patients and families.
Cheryl's Amyloid Adventures 2010
What the heck is Amyloidosis???...off to the internet…(isn’t that what google is for??). BIG Mistake! Way too much information and not all of it good. But - I couldn’t help myself.
Chris' Journey to Health - Amyloidosis Blog
This blog is intended to provide a regular update on Chris and her journey to fight amyloidosis.
NORD
Amyloidosis is a systemic disorder that is classified into several types. The different types of systemic amyloidosis are classified as primary, secondary or familial (hereditary). Primary amyloidosis (also called AL, or ‘light chain’) is the most common type of systemic amyloidosis. AL results from an abnormality (dyscrasia) of plasma cells (a type of white blood cell) in the bone marrow and is closely related to multiple myeloma.
RareConnect
Amyloidosis is a rare systemic disease caused by deposits of amyloid protein fibrils in one or more organs, causing the organs to malfunction. There are three main types: Primary Amyloidosis (AL), Secondary Amyloidosis (AA) and Familial Amyloidosis (FAP), which is the genetic form.
Harvard Health
No one knows what causes amyloidosis. To make matters more complex, amyloidosis is not a single disease, and there are many different types of amyloid proteins that can be involved. For example, Alzheimer's disease and Creutzfeldt-Jakob disease (a rare cause of dementia linked to viruses living in livestock) are two distinct conditions characterized by different types of amyloid deposits in the brain.
Introducing Stitches!
Your Path to Meaningful Connections in the World of Health and Medicine
Connect, Collaborate, and Engage!
Coming Soon - Stitches, the innovative chat app from the creators of HWN. Join meaningful conversations on health and medical topics. Share text, images, and videos seamlessly. Connect directly within HWN's topic pages and articles.
