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 1861 free, full-text research articles on human participants. First 3 results:

Tracheobronchial Amyloidosis in a Patient with Sjögren's Syndrome.
 

Author(s): Takeshi Saraya, Hiroki Nunokawa, Masachika Fujiwara, Kosuke Ohkuma, Naoki Tsujimoto, Yayoi Tsukahara, Haruyuki Ishii, Hajime Goto, Hajime Takizawa

Journal: Intern. Med.. 2016 ;55(8):981-4.

 

A 65-year-old woman was referred to our respiratory department because of incidentally detected endobronchial deposits. She had been diagnosed with Sjögren's syndrome 12 years earlier. Bronchoscopy showed protrusion of the reddened, shiny or edematous mucosa at the orifice of the ...

Last Updated: 18 Apr 2016

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Amyloid Light-Chain Amyloidosis Manifesting as Heart Failure with Preserved Ejection Fraction in a Patient with Hyper-Immunoglobulin E-emia.
 

Author(s): Yuhei Nojima, Madoka Ihara, Tetsuya Kurimoto, Shinsuke Nanto

Journal:

 

Considering the increased prevalence of heart failure with preserved ejection fraction (HFpEF) as a result of the aging population, the pathophysiology of HFpEF needs to be examined. Furthermore, many comorbidity profiles in patients with HFpEF have been reported. Hypertrophic cardiomyopathy ...

Last Updated: 11 Apr 2016

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Regional myocardial microvascular dysfunction in cardiac amyloid light-chain amyloidosis: assessment with 3T cardiovascular magnetic resonance.
 

Author(s): Rui Li, Zhi-gang Yang, Lin-yi Wen, Xi Liu, Hua-yan Xu, Qin Zhang, Ying-kun Guo

Journal:

 

Coronary microvascular dysfunction is highly prevalent in patients with amyloid light-chain (AL) cardiac amyloidosis (AL-CA). The aim of this study was to clarify the feasibility of first-pass perfusion imaging using 3 T cardiovascular magnetic resonance (CMR) for evaluating the ...

Last Updated: 6 Apr 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 181 free, full-text review articles on human participants. First 3 results:

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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Evolving landscape in the management of transthyretin amyloidosis.
 

Author(s): Philip N Hawkins, Yukio Ando, Angela Dispenzeri, Alejandra Gonzalez-Duarte, David Adams, Ole B Suhr

Journal: Ann. Med.. 2015 ;47(8):625-38.

 

Transthyretin (TTR) amyloidosis (ATTR amyloidosis) is a multisystemic, multigenotypic disease resulting from deposition of insoluble ATTR amyloid fibrils in various organs and tissues. Although considered rare, the prevalence of this serious disease is likely underestimated because ...

Last Updated: 15 Dec 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

Institutional Registry of Amyloidosis
 

Status: Recruiting

Condition Summary: Amyloidosis

 

Last Updated: 16 Dec 2015

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Last Updated: 7 Sep 2015

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Last Updated: 22 Jul 2016

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