Courtney Weirauch pictured here with her family.
Read the story of Courtney Weirauch on Michigan Medicine Health Lab: A rare diagnosis and a young mother who’s spreading the word
For many women diagnosed with lymphangioleiomyomastosis (LAM), it may be the first time they have heard of this very rare lung disease that affects women almost exclusively. The University of Michigan’s dedicated LAM Clinic is a LAM Foundation Clinic (the only one in the state of Michigan), which includes medical institutions with the expertise to deliver cutting-edge, coordinated, and multidisciplinary LAM care.
- Pulmonary Medicine
- Interventional Pulmonology
- Thoracic Surgery
We are also part of the LAM Foundation Clinical Research Network, performing cooperative research with other LAM clinics.
LAM is a progressive disease, characterized by cysts in the lungs. The cysts grow to the point of obstructing the airway, while also breaking down lung tissue. This results in lower blood-oxygen levels, forcing the heart to work harder to get oxygen to the body.
LAM Symptoms and Treatments
Symptoms of LAM include:
- Shortness of breath
- Difficulty breathing
- Chronic cough
- Chest pain
- Lung collapse
- Benign kidney tumors
Diagnosis requires a thorough patient history, a comprehensive exam, and necessary tests, such as a CT scan or a lung biopsy. A pulmonary function test—a breathing test to determine lung function using a device called a spirometer—may also be used to baseline your lung function. Diagnosis can be difficult because LAM shares many symptoms with other more common lung disorders, such as emphysema and asthma.
While there currently is no cure for LAM, there are treatments that may improve or stabilize lung function, including drug therapy, bronchodilator therapy to improve airway obstruction, supplemental oxygen, and smoking cessation. Pulmonary Rehabilitation at the University of Michigan, an 8-week program that helps patients learn multiple ways to improve breathing, can also be helpful. For some patients, a single or double lung transplant may be necessary.
Research studies and clinical trials can offer patients access to the latest therapies. For more information on current trials, visit umhealthresearch.org.
- Multicenter International Durability and Safety of Sirolimus in LAM Trial (MIDAS): The purpose of this research study is to determine if the drugs sirolimus and/or everolimus delay disease progression in people with Lymphangioleiomyomatosis (LAM). The study collects regularly scheduled clinical data to evaluate the long-term safety and effectiveness of these medications in LAM patients will provide important information for the future use of these medications for the long-term treatment of LAM.
- For more information visit, clinicaltrials.gov.