Living with Sinus histiocytosis with massive lymphadenopathy
A noncancerous condition (Rosai-Dorfman disease) in which white blood cells build up in lymph nodes, often in the neck.
Understanding Sinus histiocytosis with massive lymphadenopathy
Histiocytes are a type of white blood cell. They most often collect in the lymph nodes of the neck, but other lymph nodes and other body areas can be involved. GARD says the cause is unknown, though altered immune responses and infections may play a role. It usually starts in the teen years or adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Swollen lymph nodes
- Fever
- Anemia (low red blood cells)
- Firm lumps under the skin (less common)
- Headache (less common)
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 autoimmune and inflammatory disease specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Histiocytosis Association may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Histiocytosis Association
- 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 Histiocytosis 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
GARD says the cause is unknown, though altered immune responses and infections may play a role. It doesn't list a gene.
Also known as: destombes-rosac/-dorfman disease; destombes-rosaï-dorfman disease; histiocytosis, sinus; rdd; rosac/-dorfman-destombes disease; rosai-dorfman disease
Patient organizations
- Histiocytosis AssociationSinus histiocytosis with massive lymphadenopathy · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Sinus histiocytosis with massive lymphadenopathy.
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