Amyloidosis

Common Name(s)

Amyloidosis

Amyloidosis is a term for diseases caused by the misfolding of the amyloid protein. Deposits of these insoluble fibrillar proteins build up in tissues and lead to organ disfunction. This is a rare and serious disease. Early and accurate diagnosis is necessary as treatments are specific to the different types. The main types are: AL or "primary"; AA or "secondary"; FAP or "familial" (hereditary); and localized. Evaluation by physicians who specialize in diagnosis and treatment is critical.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Amyloidosis" for support, advocacy or research.

Amyloidosis Support Groups Inc.

• To form Amyloidosis Support Groups where needed and to have all Amyloidosis Support Groups be self-sustaining through donations (general, memorial, note cards and other awareness items) • To fund and maintain libraries of educational materials for all support groups. • To fund group projects that will help in spreading awareness, co-sponsor Amyloidosis treatment and research fundraisers, and encourage grand rounds be held on amyloidosis at local hospitals and help to encourage money be raised for such projects. • To purchase and provide awareness items such as pins, wristbands and other similar items for meetings, memorials, and fundraisers To help finance the annual educational retreat for training new and current group leaders and facilitators • To maintain a 24/7 toll free “Hot/Help Line” to answer all support inquires. • To provide on-going maintenance and informational updates on the A.S.G. web-site ( http://www.amyloidosissupport.com ). • To promote, monitor

Last Updated: 19 Nov 2012

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General Support Organizations

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How do you compare to others with this condition?

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Amyloidosis" for support, advocacy or research.

Amyloidosis Support Groups Inc.

• To form Amyloidosis Support Groups where needed and to have all Amyloidosis Support Groups be self-sustaining through donations (general, memorial, note cards and other awareness items) • To fund and maintain libraries of educational materials for all support groups. • To fund group projects that will help in spreading awareness, co-sponsor Amyloidosis treatment and research fundraisers, and encourage grand rounds be held on amyloidosis at local hospitals and help to encourage money be raised for such projects. • To purchase and provide awareness items such as pins, wristbands and other similar items for meetings, memorials, and fundraisers To help finance the annual educational retreat for training new and current group leaders and facilitators • To maintain a 24/7 toll free “Hot/Help Line” to answer all support inquires. • To provide on-going maintenance and informational updates on the A.S.G. web-site ( http://www.amyloidosissupport.com ). • To promote, monitor

http://www.amyloidosissupport.com

Last Updated: 19 Nov 2012

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Amyloidosis" returned 1440 free, full-text research articles on human participants. First 3 results:

Syndrome in question. Immunoglobulin light chain amyloidosis.
 

Author(s): Han Ma, Meilan Chen, Juan Li, Ying Li, Shu Qiu

Journal: An Bras Dermatol. ;90(2):270-1.

 

Immunoglobulin light chain amyloidosis is the most common acquired systemic amyloidosis. Its presentation is often insidious and progressive, which may delay diagnosis. The authors describe a rare case of immunoglobulin light chain amyloidosis in a 34-year-old man with scleroderma-like ...

Last Updated: 2 Apr 2015

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Pulse pressure in relation to tau-mediated neurodegeneration, cerebral amyloidosis, and progression to dementia in very old adults.
 

Author(s): Daniel A Nation, Emily C Edmonds, Katherine J Bangen, Lisa Delano-Wood, Blake K Scanlon, S Duke Han, Steven D Edland, David P Salmon, Douglas R Galasko, Mark W Bondi,

Journal: JAMA Neurol. 2015 May;72(5):546-53.

 

Increased pulse pressure associated with age-related arterial stiffening increases risk for Alzheimer dementia but the mechanism responsible for this association remains unclear.

Last Updated: 12 May 2015

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Extracorporeal membrane oxygenation as bridge-to-decision in acute heart failure due to systemic light-chain amyloidosis.
 

Author(s): Jennifer Mancio Silva, Ricardo Fontes-Carvalho, Dília Valente, Cristiana Almeida, Antonio José Cruz, David Tente, Henrique Coelho, Marco Oliveira, Aníbal Albuquerque, Vasco Gama Ribeiro

Journal:

 

Female, 58.

Last Updated: 25 Mar 2015

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Amyloidosis" returned 139 free, full-text review articles on human participants. First 3 results:

Systemic amyloidosis: lessons from β2-microglobulin.
 

Author(s): Monica Stoppini, Vittorio Bellotti

Journal: J. Biol. Chem.. 2015 Apr;290(16):9951-8.

 

β2-Microglobulin is responsible for systemic amyloidosis affecting patients undergoing long-term hemodialysis. Its genetic variant D76N causes a very rare form of familial systemic amyloidosis. These two types of amyloidoses differ significantly in terms of the tissue localization ...

Last Updated: 18 Apr 2015

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Laryngo-tracheobronchial amyloidosis: a case report and review of literature.
 

Author(s): Qinying Wang, Haihong Chen, Shenqing Wang

Journal:

 

Amyloidosis is a spectrum of diseases characterized by abnormal extracellular accumulation of proteinaceous material; its precise etiology still remains unclear. It may affect multiple organs, of which the commonest sites are larynx, bronchus and kidney. Laryngeal amyloidosis is usually ...

Last Updated: 17 Nov 2014

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Familial amyloidosis: great progress for an orphan disease.
 

Author(s): Ana Paula Barreiros, Gerd Otto, Bita Kahlen, Andreas Teufel, Peter R Galle

Journal: J. Hepatol.. 2015 Feb;62(2):483-5.

 

Last Updated: 19 Jan 2015

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

There are currently no related results available in Genetic Testing Registry.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Transthyretin-Associated Amyloidoses Outcome Survey (THAOS)
 

Status: Recruiting

Condition Summary: Transthyretin Mutations; Transthyretin Amyloidosis

 

Last Updated: 17 Aug 2015

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Last Updated: 6 Mar 2015

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A Safety Study of Carfilzomib in Patients With Previously-Treated Systemic Light Chain Amyloidosis
 

Status: Recruiting

Condition Summary: Amyloidosis; Systemic Light Chain Amyloidosis

 

Last Updated: 22 Jun 2015

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