Living with Langerhans cell histiocytosis
A condition in which extra immune cells called Langerhans cells build up in the body, often forming growths in bones and skin.
Understanding Langerhans cell histiocytosis
The extra cells usually form tumors called granulomas. About 80 percent of people have granulomas in the bones, which cause pain and swelling and sometimes fractures. Granulomas also form in the skin as blisters, bumps, or rashes. The pituitary gland may be involved, which can affect puberty and cause diabetes insipidus. In 15 to 20 percent, the lungs, liver, or blood-forming system are involved. Some researchers consider it a form of cancer, though this is debated. It can occur at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bone pain and swelling
- Skin rash or bumps
- Swollen lymph nodes
- Fever
- Cough
- Enlarged liver or spleen
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, blood and bone marrow specialists, cancer specialists and lung and breathing 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); Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists); Lung and breathing specialists (pulmonologists)
- 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
- 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 does not describe a cause for this condition. It involves a buildup of immature Langerhans cells.
Also known as: differentiated progressive histiocytosis; histiocytosis x; langerhan's cell histiocytosis; langerhans cell disease; langerhans cell granulomatosis; langerhans cell histiocytosis, nos
Patient organizations
- Histiocytosis AssociationLangerhans cell histiocytosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Langerhans cell histiocytosis.
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