My name is Jerry Dono and my 12 year old son Thomas has the rare disease Langerhans cell Histiocytosis (LCH). Langerhans cell histiocytosis (LCH) is the most common of the histiocytic disorders and occurs when the body accumulates too many immature Langerhans cells, a subset of the larger family of cells known as histiocytes. Langerhans cells are a type of white blood cell that normally help the body fight infection. In LCH, too many Langerhans cells are produced and build up in certain parts of the body where they can form tumors or damage organs.
Thomas was diagnosed in September. 2010 with a skull lesion and had surgery to remove it. He was fine up until September 2011 when he developed more lesions on his skin and on his legs. Steroid cream has kept them at bay and we just take one day at a time.
For more information, visit the Histiocytosis Foundation.