What is Histiocytosis?

Histiocytosis is a general name for a group of rare blood diseases caused by an over-production of white blood cells called histiocytes.  These cells can attack the skin, bones, lung, liver, spleen, gums, ears, eyes and/or the central nervous system. 

The histiocytosis group includes a wide variety of conditions that can affect both children and adults.  About 1 in 200,000 children born each year in the United States are affected by histiocytosis. Because it is so rare, histiocytosis is often referred to as an "orphan disease."
Most patients are diagnosed during childhood. However, histiocytosis can manifest itself for the first time in adults.

Histiocytosis is somewhat similar to cancer. Oncologists typically treat patients with chemotherapy and/or steroids. However, unlike cancer, histiocytosis sometimes goes into remission without treatment.

Langerhans Cell Histiocytosis (LCH) is one subtype of histiocytosis named for its cells of origin (Langerhans), also known as dentritic cells. These cells reside in the skin and invade other tissues. The cause of this has yet to be discovered.

At HistioCare, adolescents and adults with histiocytic disorders are seen by a pediatric hemato/oncologist, since most internsits are not familiar with the disease.

Histiocytic disorders treated at HistioCare

  • Langerhans Cell Histiocytosis (LCH) - in children and adults

  • Neurodegenerative Langerhans Cell Histiocytosis (ND-LCH)

  • Hemophagocytic Lymphohemophagocytosis (HLH)

  • Rosai Dorfman

  • Juvenila Xanthogranulomata

What to bring to your first appointment

  • Immunization and medical records of the patient
  • Any X-rays and/or scans that have been obtained (preferably on a CD if available)
  • Pathology slides and paraffin blocks (if available)
  • Proof of insurance
  • Complete list of all medications your child is taking, including over-the-counter medications and herbals (alternative medicines)
  • Social Security number of the insurance holder to verify insurance coverage

For further information or appointments please call:

Nalitt Office at (718) 226-6435, 6100 or 6400

Located at 256 Mason Avenue, adjacent to Staten Island University Hospital North.