Living with Lung lymphangioleiomyomatosis
A rare cystic lung disease, mostly in women in their mid-forties, in which unusual cells form cysts in the lungs.
Understanding Lung lymphangioleiomyomatosis
Unusual cells grow out of control in the lungs, lymph nodes and vessels, and kidneys. They form cysts that slowly block airways and replace normal lung tissue. Some people also develop kidney growths called angiomyolipomas. There is a sporadic form with unknown cause and a form linked to tuberous sclerosis complex.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Shortness of breath
- Chest pain
- Collapsed lung (pneumothorax)
- Fluid around the lungs (chylothorax)
- Blood in the urine
- Belly pain
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include genetic specialists and lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The LAM Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: The LAM Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with The LAM Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
There are two forms: a sporadic form that occurs for unknown reasons, and a form that occurs in people with an inherited disease called tuberous sclerosis complex.
Also known as: lam; lung lymphangiomyomatosis; pulmonary lymphangioleiomyomatosis
Patient organizations
- The LAM FoundationLung lymphangioleiomyomatosis · United States
- Allergy & Asthma Network Mothers of AsthmaticsLung lymphangioleiomyomatosis · United States
- American Lung AssociationLung lymphangioleiomyomatosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Lung lymphangioleiomyomatosis.
Explore research for Lung lymphangioleiomyomatosis
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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