Living with Multifocal lymphangioendotheliomatosis-thrombocytopenia syndrome
A rare condition of the lymph system with growths in blood vessels of the skin and gut and low platelets.
Understanding Multifocal lymphangioendotheliomatosis-thrombocytopenia syndrome
It causes abnormal growths in blood vessels of the skin, the digestive system, and sometimes other parts of the body. The growths look like red-brown patches that can be a few centimeters wide. They can cause problems with blood clotting. Signs are seen in the newborn period or infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Red-brown patches or bumps on the skin
- Low platelet count (thrombocytopenia)
- Bleeding in the gut
- Bleeding inside the skull
- Differences in the lungs
- Differences in the digestive tract
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 blood and bone marrow specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists)
- 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 Platelet Disorder Support Association
- 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 doesn't describe a cause for this condition yet.
Also known as: cutaneovisceral angiomatosis-thrombocytopenia syndrome; cutaneovisceral angiomatosis, thrombocytopenia syndrome; dkfzp434l132; malt1 wt allele; mlt; mlt - multifocal lymphangioendotheliomatosis with thrombocytopenia
Patient organizations
- Platelet Disorder Support AssociationMultifocal lymphangioendotheliomatosis-thrombocytopenia syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Multifocal lymphangioendotheliomatosis-thrombocytopenia syndrome.
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