Living with Abdominal cystic lymphangioma
A noncancerous growth of lymph vessels in the abdomen that can cause pain or swelling.
Understanding Abdominal cystic lymphangioma
Lymphatic vessels carry lymph, a fluid with white blood cells that fight infection. Severity varies from person to person. When present, signs can include belly pain, a larger waist, an abdominal mass, a blocked intestine, or a twisting of the intestines (volvulus). Most cases are in people with no family history.
Signs & symptoms
Symptoms vary from person to person. GARD's summary lists these possible signs:
- Abdominal pain
- Larger waist size
- Abdominal mass
- Blocked intestine
- Twisting of the intestines (volvulus)
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.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 poorly understood. Most cases occur in people with no family history of the condition.
Also known as: abdomen cystic lymphangioma; rcl
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Abdominal cystic lymphangioma.
Explore research for Abdominal cystic lymphangioma
Explore actively recruiting Abdominal cystic lymphangioma studies with HealthSpark.
Find actively recruiting studies for Abdominal cystic lymphangioma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Abdominal cystic lymphangioma studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Abdominal cystic lymphangioma
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Abdominal cystic lymphangioma experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.