Rare Lung Disease II

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Information for Patients


What is lymphangiomatosis?
Lymphangiomatosis can occur at any age, but the incidence is highest in children and teenagers. Signs and symptoms are typically present before the age of 20 and the condition is often under-recognized in adults

More information here

What is Gorham’s disease?
Gorham’s disease is extremely rare and may occur at any age, though it is most often recognized in children and young adults. The disease may stabilize after a number of years, go into spontaneous remission, or, in cases involving the chest and upper spine, prove fatal. More info


Finding a Physician

The LGD Alliance has compiled a list of physicians and centers around the world that have experience diagnosing and treating patients with different aspects of lymphangiomatosis and Gorham’s disease More Info


Patient Support

A major component of the mission of the LGDA is patient support. This includes two very important programs: our patient matching program that helps patients and families connect with one another and our awareness program that helps to raise awareness of lymphangiomatosis and Gorham’s disease among professionals and the public. More Info


Reported Complications

Links to information to help you understand in everyday terms some of the complications of LGD that have been reported in the medical literature. More info


LGD ‘Warriors’

Learn about lymphangiomatosis and Gorham’s disease through the eyes of those affected—our Warriors—who in these pages graciously and openly share their experiences in order to help others. Written by patients and family members; caregivers and friends; and those who have lost loved ones, they offer the heart-felt perspective of those whose lives have been forever altered by these two diseases. More info

Nutrition and Chylous Effusions 

Here we have compiled information about chyle, chylous leaks, and nutritional habits that may help to counteract the effects of the loss of nutrients seen in some patients with lymphangiomatosis and Gorham’s disease. More Info


Medication Information

A number of medications have been used to treat lymphangiomatosis and Gorham’s disease, with varying results. Click here


ATS Breathing in America Book

The Breathing in America: Diseases, Progress, and Hope compilation briefly describes respiratory diseases and the progress that is being made in the quest to find their cures. Click here for Chapter on Rare Lung Diseases.


Clinical Trials

Trials listed at ClinicalTrials.gov in which lymphangiomatosis & Gorham’s disease patients may be eligible to participate. More Info


ATS Patient Information Series

The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM. The information appearing in this series is for educational purposes only and should not be used as a substitute for the medical advice of one’s personal health care provider. More Info