The questions below are regarding LCH in Childhood specifically. Please click on a question to view the answer.
The questions below are regarding the Histiocytic Disorders in general, as well as Orphan Diseases. Please click on the question to view the answer.
- What are histiocytic disorders and how are they classified?
Histiocytic disorders are a diverse group of diseases caused by over-production of white blood cells known as histiocytes, which can lead to organ damage and tumor formation. They include a wide variety of conditions that can affect both children and adults.
The disorders are classified into three groups based on the types of histiocyte cells involved.
- The first group is called a dendritic cell disorder, and the most common disease in this group is Langerhans cell histiocytosis. Also included in this group are more rare diseases, Juvenile Xanthogranuloma (JXG) and Erdheim Chester.
- The second group is called a macrophage cell disorder, and includes primarily hemophagocytic lymphohistiocytosis (HLH) and Rosai-Dorfman.
- The third group is called malignant histiocytosis and includes certain kinds of leukemia and tumors.
Why are all of these diseases with different names considered to be related to each other?
All of the diseases are caused by the over-production of white blood cells called histiocytes. Their different classifications depend on the type of histiocyte involved.
Where can I find reliable information about histiocytosis?
The Histiocytosis Association’s online community provides a number of informational documents and articles, as well as links to medical articles about the histiocytic disorders. While the Internet does provide a significant volume of information about histiocytic disorders, some of this information is not accurate. It is important to look for documents that are current, are free of grammatical and spelling errors, appear to be objective, are free of advertisements, and clearly state their sources.
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How can I explain histiocytosis to family and friends?
Histiocytosis is a rare disease that is caused by the over-production of a type of white cell that can lead to organ damage and the formation of tumors. The Histiocytosis Association's Disease Fact Sheets are also a great way to help explain these complicated diseases to family and friends
What is an orphan disease?
According to the Rare Disease Act of 2002, an orphan disease, also known as a rare disease, affects less than 200,000 persons in the U.S., or less than 1 in 1500 people. The criteria may vary in other countries. For example in Europe, an orphan disease is defined to occur in less than 1 in 2000.
How many orphan diseases are there?
According to the National Institutes of Health there are approximately 6800 such diseases. Combined, they affect nearly 30 million Americans.
Where can I learn more about rare diseases in general?
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