BooksUpdated 7/11/02
Histiocytosis Specific
Hematology/Oncology Clinics of North America book on Langerhans Cell Histiocytosis - Known simply as 'the red book', this book was assembled in 1997 and is a collection of top notch papers on histiocytosis.  Excellent starting point and includes many references that I return to often.  You need to order it from the Histiocytosis Association.
Dendritic Cells: Biology and Clinical Applications by Michael T. Lotze (Editor), Angus W. Thomson (Editor) - This is an excellent collection of papers on dendritic cells.  Very technical read.  Costly ($160), updated at end of 2001.  Necessary only if you are really doing some fairly deep reading.
Lorenzo's Oil - Not a book, but a top notch movie.  I would recommend this movie to every family with Histiocytosis or a serious disease.  It really captured much of what I was feeling - the passion to not just treat Ben, but to understand and solve the problem.

Genes - Many people perceive genetics just as the stuff that makes us look the way we look, causes us to have a certain eye color or make us have a disease.  This is a very simplistic view of genetics and our cellular machinery at the DNA level.  Our genes do so much more, they are active in every cell - and different ones are active in different types of cells.  They tell the cells what to look like, what to do and where to go, they are not stagnant after we are born.  They respond to outside signals (environment, hormones, other cells) and produce what the body needs.  Understanding how genes drive cells and the complex systems of our body may allow us to understand some of how these histiocytic disorders happen. Even though most histiocytosis are not 'genetic' diseases (i.e. passed down from our relatives - with the exception of HLH), our genetic machinery is almost certainly involved.
Genome by Matt Ridley - Excellent book.  Presents multiple sides of many arguments.  Easy to read, but does not overly simplify complex issues.  It is not just about the 'Human Genome' project, it is actually about humans in general.
The Cartoon Guide to Genetics by Larry Gonick, Mark Wheelis - Good basic & simple starting point.
Introducing Genetics by Steve Jones, Borin Van Loon

The Cell - There are tons of cells involved in histiocytosis, a fundamental understand of cells and how they work goes a long way toward understanding these diseases.
Life Itself: Exploring the Realm of the Living Cell by Boyce Rensberger - Excellent book.  Easy to read.
Molecular Biology of the Cell by Bruce Alberts, Alexander Johnson, Julian Lewis, Martin Raff, Keith Roberts, Peter Walter - Large & expensive, but excellent if you want or need to deep dive.  I wish I would of had this on day one of finding out Ben was sick.
Wheater's Functional Histology: A Text and Colour Atlas by Barbara Young (Editor), John W. Heath (Editor) - Very nice histology book.  Great sections on the blood and tissue (these areas are key to understanding histiocytosis).
Color Textbook of Histology by Leslie P. Gartner, James L. Hiatt - Nice introduction to histology (study of tissue) and pathology (study of disease).
Dendritic Cells: Biology and Clinical Applications by Michael T. Lotze (Editor), Angus W. Thomson (Editor) - This is an excellent collection of papers on dendritic cells.  Very technical read.  Costly ($160), updated at end of 2001.  Necessary only if you are really doing some fairly deep reading.

Immune System - Though we do not understand fully YET, it seems likely that the histiocytoses are of immune system disorder origins.  At the very lease it certainly involves many immune system cells.  A basic understanding is key.
How the Immune System Works by Lauren M. Sompayrac - Wonderfully simple book.  Really tied together some of the immune system stuff I was getting in fragments elsewhere.  A little simplified, and does not get into the details that you may need, but a good first introduction.
Kuby Immunology by Richard A. Goldsby, Thomas J. Kindt, Barbara A. Osborne, Jani Kuby - Good deep dive.  Nice review ot the granulomas process as well.
Cellular and Molecular Immunology by Abul K. Abbas, Andrew H. Lichtman, Jordan S. Pober, Abdul K. Abbas - Nice use of diagrams to aid in understanding of concepts.
Roitt's Essential Immunology by Ivan Roitt, Peter J. Delves - Good book after you have read several of the others, but tends to be too technical otherwise.  Does get into some details that others do not.
Basic Immunology: Functions and Disorders of the Immune System by Abul K. Abbas, Andrew H. Lichtman - Small book, but still contains much of the important information.
Immunobiology by Charles Janeway (Editor), Paul Travers - A pretty good book. Seems fairly comprenhesisve.
At War Within: The Double-Edged Sword of Immunity by William R. Clark - A little dated (1997), but interesting.
A Commotion in the Blood: Life, Death, and the Immune System by Stephen S. Hall - Good historical presptctive.  A little dated.  Focused on immunotherapy  which is the field that has peeked the interest in dendritic cells.

Germs
The Secret Life of Germs: Observations of a Microbe Hunter by Philip M. Tierno Jr. Ph.D - Germs! - With immunocompromised children from chemotherapy it is good to understand the secret life of germs.  Well written, gives Protective Response Strategies that help you learn to protect against infections.
Plague Time: The New Germ Theory of Disease by Paul W. Ewald - This book puts forth very interesting and compelling evidence that germs and microbes are at the heart of many chronic and debilitating diseases such as heart disease, Alzheimer's, schizophrenia, breast cancer, cervical cancer and many others.  It really highlighted to me that there is not always clear cause and effect and germs are not as well understood as we think.  Germs (viruses, bacteria...) COULD be at the heart of histiocytosis and we do not have even the slightest understand yet.  Several articles talk about how there is not much epidemiological evidence for a viral or bacterial source (not focused in one location), but this book and the Secret Life of Germs both highlight that it is not as clear cut as you think.

Epidemology - I thought epidemiology would be interesting because if we hope to understand these diseases, it would be helpful to understand the source or cause of the disease.  This is usually done via the study of epidemiology.  No large epidemiological studies have been done on histiocytosis.
Epidemiology: An Introduction by Kenneth J. Rothman -  I was hoping for an overview on epidemiology, but this is a very dry text.

Cancer - Even though most of the histiocytoses are not considered cancer, I believe it is important to understand cancer.  First of all, to understand cancer, you need to understand environment influences, DNA and cells - all things that are most likely important in histiocytosis.  Second, most histiocytosis are treated by chemotherapy.  These chemotherapies were designed to fight cancer.
One Renegade Cell : How Cancer Begins by Robert A. Weinberg - Simple, allows you to understand what cancer really is (cancer is a word we hear often, we think we know what it means, but perhaps we do not).
The Chemotherapy & Radiation Therapy Survival Guide by Judith McKay, Nancee Hirano - Simple but clear.  Good for first early exposure to these topics.
Consumers Guide to Cancer Drugs by Gail M. Wilkes, Terri B. Ades, Irwin H. Krakoff, Irwin Krakoff - By the American Cancer Society.  Good overview of how chemotherapy works and overviews of each individual drug.

The Body - Since histiocytosis involves almost all of the body's 11 systems, an understanding of these systems will help you understand the disease.
Principles of Anatomy & Physiology by Gerard J. Tortora, Sandra Reynolds Grabowski, Gerald J. Tortora, Bonnie Roesch - Every time I open this book, I cannot believe all this information is available for only $130.  Excellent book.  It has been great for learning many of the basics.

The Brain & Mind - Because LCH and some of the other histiocytoses often impact the brain, it is important to understand the brain.  A basic understand of the central nervous system will help you understand the disease's impact.
Creating Mind : How the Brain Works by John E. Dowling - Simple to understand, well written.


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