Living with Non-Langerhans cell histiocytosis
A group of rare diseases in which immune cells build up in tissues like the bones, skin, and brain.
Understanding Non-Langerhans cell histiocytosis
The histiocytes and related cells grow abnormally, often due to changes in the immune system and high inflammation. It can affect organs such as the bones, skin, and brain. Symptoms depend on which organs are involved. It can be hard to diagnose because it can look like other conditions.
Signs & symptoms
Symptoms depend on which organs are involved. GARD describes these in its summary:
- Skin bumps
- Bone pain
- Tiredness
- Fever
- Problems with the heart, lungs, or kidneys
- Nervous system problems
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 abnormal cell growth often happens because of changes in the immune system and high levels of inflammation.
Also known as: non-langerhans-cell histiocytosis
Patient organizations
- Histiocytosis AssociationNon-Langerhans cell histiocytosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Non-Langerhans cell histiocytosis.
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