Diffuse Pulmonary Lymphangiomatosis Clinics
A Partnership with LAM
One of the most difficult manifestations of lymphangiomatosis and Gorham’s disease to diagnose and manage is diffuse pulmonary lymphangiomatosis (DPL). This manifestation involves the lymphatic system throughout the patient’s chest and has numerous clinical presentations. DPL often is a slowly progressing lung disease that can lead to respiratory failure that can occur at any age, though clinical signs may be delayed into adulthood making diagnosis and treatment more difficult – especially given the lack of adult centers for the management of vascular anomalies. Diagnosis of DPL can be made more difficult still because some of the histological findings are very similar to those of other lymphatic diseases such as lymphangiectasia, lymphangioma, and lymphangioleiomyomatosis, also known as LAM – a lymphatic pulmonary disease affecting adult women.
Through the work of The LAM Foundation, there are now 26 hospitals or medical centers in the United States that have clinics specializing in the treatment of LAM. Because of the similarities between LAM and DPL, there was found to be a natural alliance that could be employed to provide adult DPL patients access to treatment by physicians experienced in treating lymphatic disease of the lung.
The LGDA is pleased to announce the formation of a partnership to begin to utilize the LAM Clinical Network for our adult patient community, which will provide access to an adult clinical setting experienced in rare pulmonary lymphatic disease. We are confident that such a network with capabilities to provide clinical care and collect patient data and biomaterial, will support future studies to determine causes and to develop effective therapies which will enhance the well-being of our patients.
For more information Contact Us by email or call 844-588-5771.