Histiocytosis is a general name for a group of disorders that involve an abnormal increase in the number of histiocytes.
Histiocytes are white blood cells and are a normal part of the immune system. With Histiocytosis the abnormally large
number of histiocytes can cluster together and can attack skin, bones, liver, spleen, gums, ears, eyes, and/or the central
nervous system (including the brain).
Symptoms of Histiocytosis can range from mild to deadly. They can begin and end with single site involvement or grow
to affect multiple areas. Symptoms can spontaneously resolve or resist even the most aggressive chemotherapy
cocktails, radiation treatments and bone marrow transplants ending only when death occurs. Histiocytosis is rare. It is
believed to affect fewer than 1 in 200,000 children born in the United States each year. For that reason, it is considered
an "orphan disease" not generating much government-supported research. That does not stop great minds around the
world from putting their hearts, minds and souls into finding a cure or at least an effective treatment. But it does hamper
their ability to receive the funding required to carry their work where it needs to go.
The rarity of the disease also has an impact early diagnosis. Most doctors will never have a patient with Histiocytosis.
Most have never heard of it. Pediatricians see hundreds of children per month. A persistent rash will be treated as a
persistent rash until it has progressed to the stage requiring blood work.
It is a scary and foreign diagnosis for anyone, but especially for the parents of young children. It is difficult to know where
to turn for information, support and research. A good place to begin is The Histiocytosis Association of America.
Caringbridge offers a wonderful service to connect families and a good facebook group is "Our Histio Family" (invitation
only). The links found in our File Cabinet can also be a valuable resource.
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