Living with Multicentric reticulohistiocytosis
A rare disease with skin bumps and arthritis that can affect many organs, usually starting in adulthood.
Understanding Multicentric reticulohistiocytosis
It can involve the skin, bones, tendons, muscles, joints, and almost any other organ, such as the eyes, thyroid, heart, lungs, kidneys, or digestive tract. In about one fourth of cases it is linked with an underlying cancer, which suggests it may be a paraneoplastic syndrome. It usually begins in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Arthritis
- Skin bumps and nodules
- Buildup of histiocytes (a type of immune cell)
- Fever
- Muscle weakness
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 in most cases. It has been linked with an underlying cancer in about one fourth of cases.
Also known as: giant cell histiocytomatosis; lipoid dermatoarthritis; nicolau-balus syndrome
Patient organizations
- Histiocytosis AssociationMulticentric reticulohistiocytosis · United States
- Arthritis FoundationMulticentric reticulohistiocytosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Multicentric reticulohistiocytosis.
Explore research for Multicentric reticulohistiocytosis
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