Histiocytosis is a very rare disease that occurs when there are too many of the white cells known as histiocytes. Problems arise when the histiocytes gather together, travel through the blood stream and attack parts of the body.
There are quite a few different sorts of histiocytes - for example, Langerhans' Cell which are normally found in the skin. When these cells go wrong, the disease is called Langerhans' Cell Histiocytosis (LCH), while Haemophagocytic Lymphohistiocytosis (HLH) histiocytes called macrophages attack other white cells. Even rarer forms of histiocytosis are Juvenile Xanthogranuloma (JXG), Erdheim-Chester disease and Rosai Dorfman disease.
In some ways, histiocytosis is similar to cancer and as a result, has historically been treated by oncologists and haematologists with chemotherapy, radiation, steroids and bone marrow transplantation.
Sometimes the disease can just stop while in other cases it can cause long-term damage to parts of the body or even be life-threatening.
Please be advised that all the information you read in the following pages is not a replacement for the advice you will get from your consultant and their team.