Lymphangiomatosis

Common Name(s)

Lymphangiomatosis, Lymphangiomatosis (LYMF)

Lymphangiomatosis is a disease in which many tumors or cysts grow in the lymph system of the body. The lymph system extends to every major organ system except the brain and central nervous system. Though they are not cancerous, they invade body tissues and cause pain, difficulty breathing, and other symptoms depending on their location. It can affect anyone at any age, but is most commonly diagnosed in children and almost always before age 20. When a cyst or tumor is in the lungs or chest, symptoms may include dry cough, shortness of breath, wheezing, chest pressure, chest pain, and coughing up blood. Diagnosis may involve X-rays and other scans that show the affected organs or a biopsy to study a tissue sample. There are several surgical, medicinal, and nutritional strategies that may be personalized to treat each individual’s lymphangiomatosis.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

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

Lymphangiomatosis & Gorham's Disease Alliance

Our mission is to improve the care of patients through our patient support programs, and by raising funds to support research that will identify effective treatments and cures. We strive to educate patients and families, and the medical and scientific communities, by providing important, relevant information, and by being the leading advocate for the worldwide member-community.

Last Updated: 5 Nov 2012

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Lymphatic Education & Research Network

Our Mission is to fight lymphatic disease and lymphedema through education, research and advocacy. We seek to accelerate the prevention, treatment and cure of the disease while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic disorders.

Last Updated: 14 May 2014

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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 "Lymphangiomatosis" for support, advocacy or research.

Lymphangiomatosis & Gorham's Disease Alliance

Our mission is to improve the care of patients through our patient support programs, and by raising funds to support research that will identify effective treatments and cures. We strive to educate patients and families, and the medical and scientific communities, by providing important, relevant information, and by being the leading advocate for the worldwide member-community.

http://www.lgdalliance.org/

Last Updated: 5 Nov 2012

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Lymphatic Education & Research Network

Our Mission is to fight lymphatic disease and lymphedema through education, research and advocacy. We seek to accelerate the prevention, treatment and cure of the disease while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic disorders.

http://www.lymphaticnetwork.org

Last Updated: 14 May 2014

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General Support Organizations

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General Resources

Lymphatic Malformation Research

The LGDA is closely affiliated with the Lymphatic Malformation Institute (LMI). The LMI receives requests for research projects into lymphatic diseases including lymphangiomatosis and Gorham's disease.

Updated 3 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 "Lymphangiomatosis" returned 30 free, full-text research articles on human participants. First 3 results:

Diffuse lymphangiomatosis: Gorham-Stout syndrome.
 

Author(s): İrfan Yavaşoğlu, Umut Çakiroğlu

Journal: Intern. Med.. 2014 ;53(1):75-6.

 

Last Updated: 6 Jan 2014

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Diffuse pulmonary lymphangiomatosis.
 

Author(s): Kunal C Kadakia, Sandeep M Patel, Eunhee S Yi, Andrew H Limper

Journal: Can. Respir. J.. ;20(1):52-4.

 

Diffuse pulmonary lymphangiomatosis (DPL) is a rare disease characterized by infiltration of the lung, pleura and mediastinum with thin-walled lymphangiomas. DPL can result in mass effect from infiltrative disease, restrictive and obstructive pulmonary physiology, chylous effusions ...

Last Updated: 4 Mar 2013

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Pulmonary lymphangiomatosis.
 

Author(s): Melissa N Satria, Gustavo Pacheco-Rodriguez, Joel Moss

Journal: Lymphat Res Biol. 2011 ;9(4):191-3.

 

Lymphangiomatosis is a rare disease characterized by diffuse infiltration of lymphangiomas in the lung, bone, and other tissues. Due to its rarity, the spectrum of lymphangiomatosis is beginning to be elucidated based on case reports. The limited pathological, radiological, and clinical ...

Last Updated: 26 Dec 2011

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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 "Lymphangiomatosis" returned 3 free, full-text review articles on human participants. First 3 results:

A rare case of diffuse pulmonary lymphangiomatosis in a middle-aged woman.
 

Author(s): Hyun-ju Lim, Joungho Han, Hong Kwan Kim, Tae Sung Kim

Journal: Korean J Radiol. ;15(2):295-9.

 

Diffuse pulmonary lymphangiomatosis (DPL) is a rare lymphatic disorder characterized by lymphatic channel proliferation. It is mostly reported in children and young adults. Here, we report a case involving a 52-year-old asymptomatic woman who presented with increased interstitial ...

Last Updated: 19 Mar 2014

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Diffuse pulmonary lymphangiomatosis: a case report with literature review.
 

Author(s): Ming-Hua DU, Ruan-Jian Ye, Kun-Kun Sun, Jian-Feng Li, Dan-Hua Shen, Jun Wang, Zhan-Cheng Gao

Journal: Chin. Med. J.. 2011 Mar;124(5):797-800.

 

Diffuse pulmonary lymphangiomatosis (DPL) is a rare disease that is characterized by diffuse proliferation of abnormal pulmonary lymphatic channels. DPL occurs mostly in children and young adults and often undergoes a progressive clinical course, eventually causing deterioration of ...

Last Updated: 26 Apr 2011

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Treatment of thoracic lymphangiomatosis.
 

Author(s): A Y Rostom

Journal: Arch. Dis. Child.. 2000 Aug;83(2):138-9.

 

Last Updated: 17 Aug 2000

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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

Characterization of the Pathogenesis of Primary and Secondary Lymphatic Disorders
 

Status: Recruiting

Condition Summary: Lymphangiomatosis; Lymphedema; Lymphangiectasia; Pulmonary Lymphangiectasia

 

Last Updated: 4 Jun 2014

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National Lymphatic Disease and Lymphedema Registry
 

Status: Recruiting

Condition Summary: Lymphedema

 

Last Updated: 30 Sep 2014

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