Living with Kaposiform lymphangiomatosis
A rare tumor and vessel condition of the lymphatic system, often involving the lungs and chest, starting in childhood.
Understanding Kaposiform lymphangiomatosis
The lymphatic system is part of the immune system. KLA involves many parts of the body, especially the lungs and chest. Symptoms usually start in childhood and include shortness of breath and cough from fluid around the lungs and heart. Other common symptoms are chest and body pain, bleeding and bruising, and soft lumps under the skin. Diagnosis uses symptoms, lab tests, and a biopsy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Shortness of breath
- Cough
- Fluid around the lungs (pleural effusion)
- Fluid around the heart (pericardial effusion)
- Abnormal bleeding or bruising
- Bone changes (osteolysis)
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
Lymphangiomatosis & Gorham's Disease Alliance 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: Lymphangiomatosis & Gorham's Disease Alliance
- 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 Lymphangiomatosis & Gorham's Disease Alliance
- 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
The cause is unknown, and GARD says it is not thought to be inherited in families.
Patient organizations
- Lymphangiomatosis & Gorham's Disease AllianceKaposiform lymphangiomatosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Kaposiform lymphangiomatosis.
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