Trying to understand LCH

Written by Haley Lane

What is Langerhans cell histiocytosis (LCH)?
Langerhans cell histiocytosis is a rare disorder that occurs when there are too many of a type of white blood cell called a Langerhans cell (named for a German scientist). These cells normally reside in the skin and help fight infections and destroy certain foreign substances in the body. In LCH, these cells accumulate on bones and other parts of the body, particularly the head and neck, causing a wide range of problems. LCH can also be found in the ribs, sternum, long bones of the arms and legs, vertebrae of the spine, and the pelvis. Although LCH can occur in people of all ages, a majority of cases occur in children under 10 years old.





















What causes Langerhans cell histiocytosis?
The cause of Langerhans cell histocytosis is not entirely understood. Researchers are studying viral infections or environmental factors that could lead to this disorder. What are the symptoms of Langerhans cell histocytosis? LCH can result in symptoms in one or several parts of the body. Common symptoms include:

● Skin rash (Often diagnosed as cradle cap)

● Tenderness or pain originating from a bone (this explains all the pain she was in. We would always be asked were she was hurting and I would say, all over. She won't let me touch her any where. She also hasn't smiled in weeks. That was so odd because she is such a happy baby. You know the saying, “The squeaky wheel gets the grease. It is so true in this case. She handles her pain so well that every doctor was surprised when we would tell them she was in pain.

● Multiple ear infections(both her ears bursting)

● Excessive thirst and urination(her 2 gallons a day)

● Fever and night sweats(her 104 fever for 2 weeks)

● Weakness and failure to gain weight(her pictures above)

● She also has it in her organs, which is why her stomach is so huge. You can have LCH in one place or multiple places. Depending on where you have it and how severe will determine your survival rate. The odds are not in her favor.