Living with Primary intestinal lymphangiectasia
A digestive disorder in which lymph vessels in the lining of the small intestine are enlarged, causing swelling, diarrhea and protein loss.
Understanding Primary intestinal lymphangiectasia
Lymph fluid leaks into the gut, which causes protein loss, low albumin in the blood, low antibody levels and weakened immunity. People may have leg swelling and belly discomfort. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Swelling (edema), especially in the legs
- Long-lasting diarrhea
- Weight loss and slow growth
- Low red blood cells (anemia)
- Low lymphocyte count and weakened immunity
- Belly discomfort
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 digestive system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Lymphatic Education and Research Network may keep lists of experts for this condition.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Lymphatic Education and Research Network
- 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 Lymphatic Education and Research Network
- 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
GARD says the cause is still unknown.
Also known as: familial waldmann's disease (type); intestinal lymphatic obstruction; primary intestinal lymphangiectasis; primary lymphangiectasis of intestine; waldmann disease; waldmann's disease
Patient organizations
- Lymphatic Education and Research NetworkPrimary intestinal lymphangiectasia · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary intestinal lymphangiectasia.
Explore research for Primary intestinal lymphangiectasia
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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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