Living with Lymphangiomyomatosis
A condition, found almost only in women, that affects the lungs, kidneys, and lymphatic system and forms cysts in the lungs.
Understanding Lymphangiomyomatosis
It is found almost only in women, and signs usually appear in a woman's thirties. It can occur on its own (isolated or sporadic LAM) or as a feature of tuberous sclerosis complex. Abnormal muscle-like cells form lung cysts and replace normal lung tissue.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Trouble breathing (dyspnea)
- Chest pain
- Cough, sometimes with blood
- Repeated collapsed lung (pneumothorax)
- Fluid around the lungs (chylothorax)
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
Your doctor may refer you to a specialist who knows rare conditions.
- 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
- A doctor familiar with rare conditions, plus specialists as needed
- 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
- 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
It often occurs as a feature of an inherited syndrome called tuberous sclerosis complex. When it occurs alone, it is called isolated or sporadic LAM.
Also known as: lam; lymphangioleiomyomatosis; lymphangioleiomyomatosis, somatic; tsc1-related lymphangioleiomyomatosis
Patient organizations
- The LAM FoundationLymphangiomyomatosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Lymphangiomyomatosis.
Explore research for Lymphangiomyomatosis
Explore actively recruiting Lymphangiomyomatosis studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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