Learn About The Histiocytoses
Disclaimer:  All of these primers are written by parents that have NO medical background prior to having to deal directly with the disease.  The contents should not be misinterpreted as medical advice.  Our opinions could be wrong.  The intent is to help you come up the learning curve and hopefully bypass some of the difficulties we have encountered.  Always refer to your doctor.  Like almost all things in life, there are many correct answers.
Family Association for Histiocytosis Group of Medical Professionals Working on Histiocytosis Think Tank on Histiocytosis
Please, if you have any additions or corrections, they would be greatly appreciated.  stokman1@cox.net  Click here to return to Ben's main page.

Our focus is on the Dendritic Histiocytoses or disorders of dendritic cells, such as LCH and JXG.

Note that there are two ways I am trying to appoach this problem, and hopefully they meet somewhere in between:
1) Bottom Up: What does a lesion look like? What does it consist of? What mechanisim could have produced it? What other diseases act in the same way?
2) Top Down: What is the nomral function of the immune system and the cells involved in Histiocytosis?  What are the potential failure modes of the immune system that could produce the effect (histiocytosis) we see?

Primers


General
  • What histiocytosis is: A few frequently asked questions about Histiocytosis
  • What question we still have (these are my working questions)
  • Types of histiocytosis (Nosology)
  • What kind of doctors may be involved in treating a patient with histiocytosis
  • Key mistakes to try to avoid
  • The history of the histiocytosis and some of the other things it is called
  • The cells involved in Histiocytosis
    • Diagnosis .
  • Pathology - diagnosing the disease, what the lesions are made of & what cells are involved
  • Staging - assessing the severity of the disease
    • Cause .
  • What causes the Histiocytoses (Epidemiology & Etiology)
    • Mechanism   .
  • The mechanisms (Pathophysiology & Pathogenesis) of histiocytosis
  • The immune system
  • The cells involved in Histiocytosis (same as above)
    • Effect    .
  • How the Histiocytoses impact the body (Clinical Presentation / symptoms)
  • Central nervous system or brain involvement
  • Blood counts
  • Some statistics on histiocytosis (LCH, JXG,....)
  • Success factors (things that indicate good outcome)
    • Solutions    .
  • Chemotherapy
  • Surgery
  • Radiation
  • Current research in areas that may help solve the problems of histiocytoses

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    Key Articles

    Dr. Jubran's Presentation - a great overview of LCH
    Dr. Jaffe's 'The Histiocytoses'
    Dr. Freyer's 'Juvenile Xanthogranuloma: Forms of Systemic Disease and their Clinical Implications'
    Dr. Grois's  'Central Nervous System Disease in LCH'
    Dr. Arceci's 'New Treatment Approaches for Patients with LCH'
     

    Key Sources of Information

    Reference Articles
    Web Sites
    Books
    Key Doctors


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