Living with Localized Castleman disease
A condition in which one group of lymph nodes becomes enlarged, sometimes pressing on nearby organs.
Understanding Localized Castleman disease
It often starts as an enlarged lymph node. Some people have no other features, while others have symptoms when the node pushes on nearby organs or tissues. It is different from multicentric Castleman disease, which is more widespread. It can occur at any time in life.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes these features:
- Enlarged lymph node
- Symptoms from pressure on nearby organs or tissues
- No symptoms in some people
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.
- 4Connect with expert centers
Autoimmune Association and Castleman Disease Collaborative Network may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Autoimmune Association, Castleman Disease Collaborative 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 Autoimmune Association and other patient organizations
- 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 exact cause is currently unknown.
Also known as: localised angiofollicular lymphoid hyperplasia; localized angiofollicular lymphoid hyperplasia; unicentric castleman disease
Patient organizations
- Autoimmune AssociationLocalized Castleman disease · United States
- Castleman Disease Collaborative NetworkLocalized Castleman disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Localized Castleman disease.
Explore research for Localized Castleman disease
Explore actively recruiting Localized Castleman disease studies with HealthSpark.
Find actively recruiting studies for Localized Castleman disease 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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