Histiocytosis Program
Histiocytosis Resources

Conditions We Treat

While not exhaustive, the following list includes conditions for which our program offers expert, specialized care.

Histiocytosis
Langerhans cell histiocytosis (LCH)
Histiocytosis X
Eosinophilic granuloma
Hemophagocytic Lymphohistiocytosis (HLH)
Familial erythrophagocytic lymphohistiocytosis (FEL)
Virus-associated hemophagocytic syndrome (VAHS)
Sinus Histiocytosis with Massive Lymphadenopathy
Rosai-Dorfman Syndrome
Juvenile Xanthogranuloma (JXG)
Erdheim Chester Disease (ECD)
Multifocal Reticulohistiocytosis
Malignant Histiocytosis/Histiocytic Sarcoma

Frequently Asked Questions

Are histiocytic disorders considered a type of cancer?

Histiocytic disorders (or histiocytoses) are a group of conditions involving histiocytes, a type of immune cell. Some forms, such as Langerhans cell histiocytosis (LCH) and related conditions (Erdheim-Chester Disease, Rosai-Dorfman Disease and Xanthogranuloma), may be considered part of the cancer family because they can involve cancer-associated mutations that affect cell growth. Other forms, like hemophagocytic lymphohistiocytosis (HLH) and macrophage activation syndrome, are usually classified as immune system disorders rather than cancer.

Is histiocytosis inherited?

Most histiocytic disorders are not inherited. They result from gene mutations that occur in specific white blood cells during development or after birth. However, hemophagocytic lymphohistiocytosis (HLH) can be inherited when genes that regulate immune function do not work properly.

Will my other children develop histiocytosis?

Siblings of children with Langerhans cell histiocytosis (LCH) and related disorders (Erdheim-Chester Disease, Rosai-Dorfman Disease and Xanthogranuloma) are not at increased risk, except in very rare cases involving twins. Siblings of children with hemophagocytic lymphohistiocytosis (HLH) may be at risk if the condition is genetic.

Can my child pass this condition on to their kids?

People with Langerhans cell histiocytosis (LCH) and related disorders (Erdheim-Chester Disease, Rosai-Dorfman Disease and Xanthogranuloma) cannot pass these conditions to their children. In rare cases, people with hemophagocytic lymphohistiocytosis (HLH) can pass on the condition if it is genetic.

Why did my child develop histiocytosis?

Langerhans cell histiocytosis (LCH) and related disorders occur because of random genetic changes during development of the immune system. Both children and adults can develop these conditions. Hemophagocytic lymphohistiocytosis (HLH) usually develops because of a combination of underlying immune problems and a trigger such as infection, autoimmune disease or cancer.

How rare are histiocytic disorders?

Langerhans cell histiocytosis (LCH) occurs in about five children per million, similar to pediatric Hodgkin disease, and is slightly more common in children with Hispanic heritage.
Erdheim-Chester Disease, Rosai-Dorfman Disease, and Xanthogranuloma are even rarer than LCH.
Hemophagocytic lymphohistiocytosis (HLH) occurs in about one child per million.

While these conditions are rare, our Histiocytosis Program specializes in providing expert care to these patients. Because of our size and national and international referrals, at Texas Children’s Cancer and Hematology Center, histiocytic disorders are not rare to us.

Can histiocytic diseases be cured?

The goal for treating patients with histiocytic disorders is to control symptoms and ultimately achieve a cure. Some patients may be cured with a simple procedure or steroid injection. Others may need chemotherapy, targeted therapy or a bone marrow transplant.

Advocacy Organizations

Beyond Diagnosis | A Resource for Families
Texas Children’s Cancer and Hematology Center offers Beyond Diagnosis, a comprehensive handbook with local, national and online resources to support patients and families navigating a cancer or blood disorder diagnosis. Download it at texaschildrens.org/beyonddiagnosis or use the button below.

Download Beyond Diagnosis

Below, see a list of organizations selected from Beyond Diagnosis that are relevant to histiocytosis disorders.