About JXG

What is Juvenile Xanthogranuloma (JXG)?
JXG is a rare disease that belongs to a group of illnesses called histiocytoses that in most cases attack children under ten year old. Histiocytic disorders are associated with an excess of white blood cells (histiocytes) that are part of the immune system and whose function is to fight infections. For unknown reasons, the histiocytes cluster together forming bumps (lesions) that attack different organs of the human body. There are three manifestations of this disease: 1) Cutaneous JXG, where lesions are only found in the skin and usually follows a benign course without treatment. 2) Systemic JXG, where lesions are present in multiple organs such as skin, eye, lung, spinal cord, brain, etc. and surgery, chemotherapy, radiation, or steroids are usually required. This expression of the condition is very serious and survival depends on the extend of non-skin disease. 3) Ocular JXG: where lesions are present in the eyes of the patient and they may or may not be accompanied by skin lesions. According to the article entitled "Uncommon Histiocytic Disorders" by Weitzman and Jaffe of the Hospital for Sick Children from Toronto, Canada, the chances of Cutaneous JXG becoming Systemic are low, around 4% to 10%. Due to the infrequency of the disease and its misdiagnoses is very difficult to obtain accurate numbers of the people affected by it. However, its is roughly estimated that Cutaneous JXG attacks 1 in a million children and Systemic JXG affects 1 in 10 million children. For a more info, please read the links below:
Definition of JXG by the Histiocytiosis Association of America (HAA)
Video lecture on Skin JXG by Dr. Sheila Weitzman. Toronto, Canada
Video lecture on Systemic JXG by Dr. Sheila Weitzman. Toronto, Canada
Video lecture on Histiocytic Disorders by Dr. Sheila Weitzman. Toronto, Canada

What is a Rare Disease?
Rare illnesses are those that affect fewer than 200,000 individuals. According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million people in this country. This types of disorders,  are also refereed as orphan diseases, since they affect too few people to generate goverment funded research. Most research efforts are supported by private organizations and donors. People with rare diseases experience certain challenges that occur as a result of the fact that their diseases are rare. These include: Difficulty in obtaining a timely, accurate diagnosis. Limited treatment options. Difficulty in finding physicians or treatment centers with needed expertise. Treatments that are generally more expensive than those for common diseases. Reimbursement issues related to private insurance, Medicare and Medicaid. A sense of isolation and hopelessness. For more information on Rare Disease, please visit:
National Organization for Rare Diseases (U.S.)
Rare Diseases Europe (E.U.)
Federacion Española de Enfermedades Raras (FEDER)
Fundasion Geiser (Latin America)

How does Cutaneous JXG look like?

Where to ask questions:
Message Board from the Histiocytosis Association of America

JXG Organizations:
Histiocytiosis Association of America (U.S.)
Sydney Salem Golding Fund (U.S)
The Histiocytosis Research Trust (U.K.)
Histio Heroes Research Organization (U.S.)
Histiocytosis Association of Canada (Canada)
Asociacion Española Contra la Histiocitosis (Spain)

JXG Websites and Blogs:
Juvenile Xanthogranuloma Online Support in Facebook
Juvenile Xanthogranuloma (JXG) and Neurofibromatosis Group in Facebook
Histiocytosis Association of America in Facebook
Histiocytosis Research Trust in Facebook
Histio Heroes Research Fund in Facebook
Potts Family 4 Blog (Skin JXG). Look for the JXG label
My Two Happy Homeschoolers Blog (Skin JXG)
Ben Stokman Website (Systemic JXG)
Cole Kambeitz Blog. A Journey with Cell Histiocytis (LCH) (Sytemic JXG)
Tanner Bertauche's Blog (Systemic JXG)
Care Pages Discussion Forums
Neurofibromatosis, Inc Support Community

Medical Papers on Juvenile Xanthogranuloma:
In the Histiocytosis Association of America (HAA) website, go to "Disease Information" in the left navigation bar, then "Juvenile Xanthogranulomatosis," then "Related Articles."
JXG Medical Papers by the HAA
Note: Juvenile Xanthogranuloma is the most common of the "Non-Langerhans Cells" forms of histiocytosis. If you are looking for medical papers on JXG, try using this terminology instead and you will find more articles.

* If you know any other links that could be helpful to the JXG community, please email us using our "Contact Form" located at the top left side of this page.Thanks!