Living with Lymphomatoid granulomatosis
A rare condition with too many B white blood cells that can damage blood vessels, most often in the lungs.
Understanding Lymphomatoid granulomatosis
These cells can build up in tissues and damage blood vessels. In many cases, the abnormal B cells contain the Epstein-Barr virus. It is more common in men, usually after age 50. It most often affects the lungs, and sometimes skin, brain and nerves, kidneys, or liver.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Cough
- Shortness of breath
- Chest tightness
- Fever
- Weight loss
- Tiredness (fatigue)
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 and cancer 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); Cancer specialists (oncologists)
- 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 not well understood. GARD says a combination of genetic and immune factors are thought to play a part.
Also known as: angiocentric immunoproliferative lesion; lg - lymphomatoid granulomatosis; lyg
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 Lymphomatoid granulomatosis.
Explore research for Lymphomatoid granulomatosis
Explore actively recruiting Lymphomatoid granulomatosis studies with HealthSpark.
Find actively recruiting studies for Lymphomatoid granulomatosis 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
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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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