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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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 1865 free, full-text research articles on human participants. First 3 results:

2A4 binds soluble and insoluble light chain aggregates from AL amyloidosis patients and promotes clearance of amyloid deposits by phagocytosis (†).
 

Author(s): Mark Renz, Ronald Torres, Philip J Dolan, Stephen J Tam, Jose R Tapia, Lauri Li, Joshua R Salmans, Robin M Barbour, Paul J Shughrue, Tarlochan Nijjar, Dale Schenk, Gene G Kinney, Wagner Zago

Journal: Amyloid. 2016 Sep;23(3):168-177.

 

Amyloid light chain (AL) amyloidosis is characterized by misfolded light chain (LC) (amyloid) deposition in various peripheral organs, leading to progressive dysfunction and death. There are no regulatory agency-approved treatments for AL amyloidosis, and none of the available standard ...

Last Updated: 29 Sep 2016

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Amyloid goiter as the first manifestation of systemic amyloidosis.
 

Author(s): Ibtissem Oueslati, Karima Khiari, Hayet Kaaroud, Nadia Znaidi, Nadia Mchirgui, Soumaya Rammeh, Néjib Ben Abdallah

Journal: Tunis Med. 2016 Jan;94(1):82.

 

Last Updated: 16 Aug 2016

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Bone scintigraphy for early detection of transthyretin cardiac amyloidosis.
 

Author(s): Asad Ikram

Journal: J Pak Med Assoc. 2016 Aug;66(8):1045.

 

Last Updated: 15 Aug 2016

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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 177 free, full-text review articles on human participants. First 3 results:

Localized primary amyloidosis of the breast: a case report and review of the literature.
 

Author(s): Wakako Tsuji, Eiji Takeuchi, Satoshi Oka, Taro Yamashita, Fumiaki Yotsumoto

Journal:

 

Primary amyloidosis of the breast is an unusual benign disease that mostly occurs in postmenopausal elderly women. Amyloidosis is the deposition of amorphous protein within tissues. Breast biopsy is necessary to make a definite diagnosis in order to avoid unnecessary surgical methods. ...

Last Updated: 14 Sep 2016

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Immunoglobulin Light-Chain Amyloidosis: From Basics to New Developments in Diagnosis, Prognosis and Therapy.
 

Author(s): Eli Muchtar, Francis K Buadi, Angela Dispenzieri, Morie A Gertz

Journal: Acta Haematol.. 2016 ;135(3):172-90.

 

Immunoglobulin amyloid light-chain (AL) amyloidosis is the most common form of systemic amyloidosis, where the culprit amyloidogenic protein is immunoglobulin light chains produced by marrow clonal plasma cells. AL amyloidosis is an infrequent disease, and since presentation is variable ...

Last Updated: 23 Jan 2016

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Recommendations for presymptomatic genetic testing and management of individuals at risk for hereditary transthyretin amyloidosis.
 

Author(s): Laura Obici, Jan B Kuks, Juan Buades, David Adams, Ole B Suhr, Teresa Coelho, Theodore Kyriakides,

Journal: Curr. Opin. Neurol.. 2016 Feb;29 Suppl 1():S27-35.

 

These recommendations highlight recent experience in genetic counselling for the severe autosomal-dominant, late-onset transthyretin familial amyloid polyneuropathy (TTR-FAP) disease, and present a structured approach towards identification and monitoring of asymptomatic carriers ...

Last Updated: 22 Jan 2016

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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

Institutional Registry of Amyloidosis
 

Status: Recruiting

Condition Summary: Amyloidosis

 

Last Updated: 16 Dec 2015

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Diagnostic Utility of F-18 Florbetapir PET/MR in Peripheral Nerve Amyloidosis
 

Status: Not yet recruiting

Condition Summary: Amyloidosis

 

Last Updated: 12 Jan 2017

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Last Updated: 7 Sep 2015

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