the rundown

Here is the rundown on HLH, the causes and how it can be cured. 

Hemophagocytic lymphohistiocytosis (HLH) is a rare disease most commonly found in younger children. The human body has cells designed to fight infection, one of which is called the hystiocyte. In cooperation with other cells, they protect the body's immune system, and are produced by bone marrow. Patients with HLH have too many of these cells, which in turn causes inflammation and can cause damage to a variety of organs. 

At this time, scientists do not know all of the causes of HLH, but the two causes they know of now are:


*The primary form: the disease is caused by defective genes inherited from both the mother and father (also called familial hemophagocytic lymphohistiocytosis) 


*The secondary form: develops after abnormal activity of the immune system such as immunosuppressive therapy and/or infections


A bone marrow transplant offers the best cure for patients with the primary form of HLH. They first undergo chemotherapy to destroy their diseased marrow. Then, if there is a donor match, the donors blood-forming cells are put directly into the patients bloodstream. Here they can begin to function and multiply. In some cases of secondary HLH the underlying cause of the disease can be identified and treated.  

1.2 in every 1,000,000 children under the age of fifteen are infected. 

70% of patients with HLH do not have a donor match in their family and rely on an unrelated marrow donor to save their life. 

That percentage is not okay. YOU could be a match to someone who is fighting for their life right now. All you have to do is register to be a bone marrow donor, and you could save someones life.

Click here to go to the National Marrow Donor Program's website and register. After you do that, email me and tell me about it. At the end of June I will be raffling off prizes to those of you who have registered to be a bone marrow donor, or donate cord blood 


You can also click here to donate to the Matthew and Andrew Akin Foundation to help fund research for HLH. 

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