Being told you have Histiocytosis, can leave you feeling shocked, upset and very isolated. There are so many questions to be answered and so many feelings to deal with, here we try to answer some of the questions you may have.
Doctors and scientists often call it an ‘orphan’ disease because it is so rare. As a result, research into why it happens and how it can best be treated has been limited.
LCH is one of several diseases known as the ‘histiocytoses’ or ‘histiocytic disorders’ as they involve cells in the body known as histiocytes. A histiocyte is a type of white blood cell which normally helps to fight infection. However, in those suffering from LCH, the histiocytes gather together in large numbers causing damage to healthy parts of the body, such as the bone, skin, lymph nodes, lungs, liver, spleen, bone marrow, and pituitary gland. Why this happens, we do not yet know.
Is LCH a cancer?
This question has been the subject of debate and scientific study for a long time. There is now evidence that the histiocytes in most LCH lesions have genetic abnormalities, similar to the abnormalities seen in some cancer cells. These findings support the notion that LCH is a cancer. However, the way LCH affects people ranges from being very aggressive and resistant to treatment, to mild forms of the disease which may resolve spontaneously. This is unlike almost all cancers. LCH is classified as a cancer but more research is being undertaken to improve our understanding of the origin and mechanism of this disease
LCH varies a lot, so you need to focus on yourself and how the disease is affecting you. Your consultant will be able to help with the specific questions about your particular disease and treatment. It is a good idea to write down things you want to know, so that you remember everything you would like to ask when you see your medical team. It is also useful to have a notebook to write down what you are told, as it can be difficult to take everything in at the time.
How does LCH affect patients?
Some patients have no symptoms at all and the disease is found ‘by accident’ when they are investigated for something unrelated. More often however, they have symptoms caused by the LCH affecting a particular part of the body.
Although it is possible for LCH to affect people in many different ways it is not uncommon for LCH patients to appear well - this can make the diagnosis even harder to take in.
Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.
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