l c h

Hi everyone Thank you all for replying to my questions thought I should tell you a little about L.C.H Histiocytic Disorders Its not at all surprising that you haven't heard of this disease When I saw my consultant for my lung biopsy she sat at her computer with google up on the screen lol as she'd only ever heard of It 20 so years ago when Training to become a doctor and hadn't ever came across it Iv'e since joined other fb groups but as you can imagine their very small group s ;)

Histiocytic disorders are a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation. This group is made up of a wide variety of conditions that can affect both children and adults. In order to reduce confusion, in 1987, the Histiocyte Society classified these disorders 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 (LCH). Also included in this group are more rare diseases, juvenile xanthogranuloma (JXG) and Erdheim-Chester Disease (ECD).

• The second group is called a macrophage cell disorder, and includes primarily hemophagocytic lymphohistiocytosis (HLH) and Rosai-Dorfman Disease (RD).

•The third group is called malignant histiocytosis and includes certain kinds of leukemia and malignant tumors. Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multiorgan involvement that can be chronic and debilitating.In some cases, the disease can be life-threatening. In some ways, histiocytosis is similar to cancer and has historically been treated by oncologists with chemotherapy and radiation. Unlike cancer, histiocytosis sometimes goes into remission without treatment.

It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is often referred to as an "orphan disease," meaning it strikes too few people to generate government - supported research. X

7 Replies

  • Very informative, thanks.

  • Thanks for the info as I had never heard of this disease either. xxx

  • Thank you for that explanation!😁 I felt bad that I didn't have a clue about it but I'm glad you found some info, I have Alpha1AD, there are a good few of us with it and it's classed as rare disease now.

    I found it very interesting about the eyes and ears, thank you again and hope you will be as well as possible😊 huff xxx

  • Hi hufferpuffer Iv'e never heard if your disease Alpha1 AD ether I would love to hear about It thats something we have in common we're both rare lol

  • Yep! We're very unique and special lol! Alpha 1Antitrypsin Deficiency is a genetic disorder, goes back to the Vikings...😏 what happens is because we don't make enough Alpha1( a protein) or what we do make can get stuck in our liver, elastase comes along and 'attacks' us as there is no Alpha1 to protect us resulting in lung and or liver damage.That's it in a nutshell there's a bit more to it treally lol!!😀

    It's nice to meet you Winterrose 😁 xxx

  • O wow there's some strange diseases around hope your being looked after well with your genetic disorder It seems to take forever to get rare illnesses diagnosed lovely to meet you to hufferpuffer :) xx

  • Wow you look very young to have a dreadful disorder hope every thing will work out for you

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