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 1804 free, full-text research articles on human participants. First 3 results:

Prediction of long-term survival after liver transplantation for familial transthyretin amyloidosis.
 

Author(s): Vincent Algalarrondo, Teresa Antonini, Marie Théaudin, Béatrice Ducot, Pierre Lozeron, Denis Chemla, Anouar Benmalek, Catherine Lacroix, Daniel Azoulay, Denis Castaing, Cécile Cauquil, François Rouzet, Sylvie Dinanian, Ludivine Eliahou, Dominique Le Guludec, Didier Samuel, Michel S Slama, David Adams

Journal: J. Am. Coll. Cardiol.. 2015 Nov;66(19):2154-6.

 

Last Updated: 6 Nov 2015

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Hereditary Transthyretin Amyloidosis in Eight Chinese Families.
 

Author(s): Ling-Chao Meng, He Lyu, Wei Zhang, Jing Liu, Zhao-Xia Wang, Yun Yuan

Journal: Chin. Med. J.. 2015 Nov;128(21):2902-5.

 

Mutations of transthyretin (TTR) cause the most common type of autosomal-dominant hereditary systemic amyloidosis, which occurs worldwide. To date, more and more mutations in the TTR gene have been reported. Some variations in the clinical presentation are often observed in patients ...

Last Updated: 2 Nov 2015

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[A Case of Primary Gastric Amyloidosis with Fulminant Heart Failure].
 

Author(s): Seonghun Hong, Young Woon Chang, Jong Kyu Byun, Min Je Kim, Jung Min Chae, Sun Hee Park, Chi Hyuk Oh, Yong Koo Park

Journal: Korean J Gastroenterol. 2015 Oct;66(4):227-30.

 

A 53-year-old woman was admitted with epigastric discomfort and weakness. Laboratory examination at admission showed mild anemia and proteinuria. Esophagogastroduodenoscopy revealed marked mucosal atrophy, diffuse nodularity and granular appearance with mucosal friability. Biopsy ...

Last Updated: 23 Oct 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 171 free, full-text review articles on human participants. First 3 results:

Diagnosis, Prognosis, and Therapy of Transthyretin Amyloidosis.
 

Author(s): Morie A Gertz, Merrill D Benson, Peter J Dyck, Martha Grogan, Terresa Coelho, Marcia Cruz, John L Berk, Violaine Plante-Bordeneuve, Hartmut H J Schmidt, Giampaolo Merlini

Journal: J. Am. Coll. Cardiol.. 2015 Dec;66(21):2451-66.

 

Transthyretin amyloidosis is a fatal disorder that is characterized primarily by progressive neuropathy and cardiomyopathy. It occurs in both a mutant form (with autosomal dominant inheritance) and a wild-type form (with predominant cardiac involvement). This article guides clinicians ...

Last Updated: 27 Nov 2015

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Primary systemic amyloidosis initially presenting with digestive symptoms: a case report and review of the literature.
 

Author(s): Xiu Lin, Yueping Mao, Qing Qi, Chuyi Zhang, Yongzhen Tian, Yanyang Chen

Journal:

 

Primary systemic amyloidosis (PSA) is one of systemic amyloidosis, characterized by clonal plasma cell disorder. The disease is rare and with high fatality. Signs and symptoms of PSA are various and complex, which depend on the organs involved. Here we report a case in which the patient ...

Last Updated: 22 Sep 2015

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Nodular pulmonary amyloidosis and obvious ossification due to primary pulmonary MALT lymphoma with extensive plasmacytic differentiation: Report of a rare case and review of the literature.
 

Author(s): Hua Xiang, Zuqun Wu, Zhaoming Wang, Hongtian Yao

Journal:

 

Localized (primary) pulmonary amyloidosis associated with pulmonary low-grade B cell lymphoma is rarely occurred. Here we report an unusual case of nodular pulmonary amyloidosis and obvious ossification due to primary pulmonary mucosa-associated lymphoid tissue (MALT) lymphoma with ...

Last Updated: 11 Aug 2015

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in Genetics Home Reference.

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: 18 May 2016

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Last Updated: 1 Oct 2015

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The Study of an Investigational Drug, Revusiran (ALN-TTRSC), for the Treatment of Transthyretin (TTR)-Mediated Amyloidosis in Patients Whose Disease Has Continued to Worsen Following Liver Transplant
 

Status: Recruiting

Condition Summary: Transthyretin (TTR)-Mediated Amyloidosis; Familial Amyloidotic Polyneuropathy (FAP); ATTR Amyloidosis; Familial Amyloid Neuropathies

 

Last Updated: 4 Dec 2015

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