Living with Grade III lymphomatoid granulomatosis
An advanced form of a rare lymphoma in which nodules damage blood vessels, often in the lungs, skin, and nervous system.
Understanding Grade III lymphomatoid granulomatosis
Lymphomatoid granulomatosis (LG) most often affects people in their 50s and 60s, but also occurs in other adults and in children. The lungs are usually affected, and the skin and central nervous system can be involved. It is made of B-cells that carry Epstein-Barr virus (EBV), mixed with reactive T-cells, and often occurs with an underlying immune problem such as rheumatoid arthritis, organ transplant, or HIV. Grade III is treated as a subtype of diffuse large B-cell non-Hodgkin lymphoma.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary says features can reflect disease in many organs, including:
- Lung involvement
- Skin involvement
- Central nervous system involvement
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
GARD says it often occurs with an underlying weakened immune state, such as rheumatoid arthritis, organ transplant, or HIV, and involves cells with Epstein-Barr virus.
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 Grade III lymphomatoid granulomatosis.
Explore research for Grade III lymphomatoid granulomatosis
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