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 1430 free, full-text research articles on human participants. First 3 results:

Amyloidosis in Behcet's disease.
 

Author(s): I Ben Ghorbel, N Bel Feki, T Ben Salem, M Lamloum, M H Houman

Journal: Saudi J Kidney Dis Transpl. 2015 Jan;26(1):132-4.

 

Behcet's disease (BD) is a multisystem vasculitis with protean manifestations. It is characterized by a heightened state of inflammation, although the factors that initiate and sustain this inflammation are not clear. We report some cases of BD-associated amyloidosis and have similar ...

Last Updated: 12 Jan 2015

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Waldenström's macroglobulinemia accompanying systemic amyloidosis: the usefulness of endobronchial ultrasound-guided transbronchial needle aspiration for detecting amyloid deposits.
 

Author(s): Takashi Ishiguro, Noboru Takayanagi, Nagaaki Katoh, Yoshihiko Shimizu, Toshiko Hoshi, Tsutomu Yanagisawa, Yutaka Sugita

Journal: Intern. Med.. 2014 ;53(24):2789-93.

 

A 75-year-old man with a history of dyspnea lasting for three years presented to our hospital. Chest computed tomography showed bilateral pulmonary nodules, some of which were calcified, in addition to mediastinal/hilar lymphadenopathy and bilateral pleural effusions. Endobronchial ...

Last Updated: 16 Dec 2014

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Finger amyloidosis in a patient with myeloma.
 

Author(s): Jing Tan, Pan Zao

Journal: Intern. Med.. 2014 ;53(18):2175-6.

 

Last Updated: 16 Sep 2014

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

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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Secondary intestinal amyloidosis presenting intractable hematochezia: a case report and literature review.
 

Author(s): So Hyun Kim, Jae Hwang Kim, Mi Jin Gu

Journal:

 

Amyloidosis is characterized by an extracellular deposition of insoluble fibrils. Amyloid deposition caused various clinical symptoms associated with affected organs. Secondary amyloidosis without renal involvement and chronic inflammatory conditions is rarely reported. We experienced ...

Last Updated: 12 May 2014

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Update on treatment of light chain amyloidosis.
 

Author(s): Shameem Mahmood, Giovanni Palladini, Vaishali Sanchorawala, Ashutosh Wechalekar

Journal: Haematologica. 2014 Feb;99(2):209-21.

 

Light chain amyloidosis is the most common type of amyloidosis as a consequence of protein misfolding of aggregates composed of amyloid fibrils. The clinical features are dependent on the organs involved, typically cardiac, renal, hepatic, peripheral and autonomic neuropathy and soft ...

Last Updated: 5 Feb 2014

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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: 29 Apr 2015

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The Effect of Diflunisal on Familial Transthyretin Amyloidosis
 

Status: Recruiting

Condition Summary: Amyloidosis

 

Last Updated: 26 Aug 2014

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Last Updated: 6 Mar 2015

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