Rare Lung Disease II

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Information for Patients

Rare Lung Disease Week II

Lung Information for Patients

  • What is lymphangiomatosis?

    • 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.

  • What is Gorham’s disease?

    • 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.

  • About the LGDA

    • Mission and goals of the LGDA.

  • Finding a Physician

    • The Lymphangiomatosis & Gorham's Disease Alliance (LGDA) has compiled a list of medical specialists and expert centers around the world that have experience diagnosing and treating patients with different aspects of lymphangiomatosis and Gorham’s disease.

  • 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. We also are at work developing a physician guide for 2016.

  • Research Support

    • As part of its research support efforts, the LGDA has established a patient registry and will be establishing a tissue bank soon.

  • International Patient Registry

    • As part of its research support program, the LGDA established the International LGDA Registry for Lymphatic Malformations. The LGDA registry is open to all patients interested in learning more about their disease and helping to establish the number of patients. To register yourself or your child go to www.lgdaregistry.org

  • 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.

  • ATS Patient Information Series

    • The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM (www.atsjournals.org). 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.

  • ATS Breathing in America Book

    • The Breathing in America: Diseases, Progress, and Hope compilationbriefly describes respiratory diseases and the progress that is being made in the quest to find their cures.