Many of you may know that as an infant I was diagnosed with Histiocytosis X (now called Langerhans Cell Histiocytosis (LCH)). A histiocyte is a form of white blood cell, whose job is to help destroy certain foreign materials and fight infection. For unknown reasons, patients with this disease have too many histiocytes (Langerhans cells). These cells accumulate in different organs and can result in a variety of symptoms. Infants with multiple symptoms due to LCH are given very little time to live. For me symptoms included both skin and skull lesions and my parents were told that I had less than a year to live. Treatment options are limited since Histiocytosis is very rare, (8.9 of every 1,000,000 children under the age of 15 have histiocytosis), there wasn't much that could be done for me. I received radiation treatment for the skull lesion (I still have a small bald spot on my head from it.) and my mother can tell you stories of moving me around the house to keeping me in the sunlight for the skin lesions. Miraculously and still unexplained by Doctors the symptoms began do disappear and 28 years later I am still symptom free.
While LCH is not considered a cancer (though its exclusion is still the subject of debate by many experts) it is treated by the same doctors and with many of the same treatments as cancer. That being the case many research studies involving LCH are handled by cancer research centers, in particular the Children's Oncology Group one of the primary beneficiaries of The St. Baldricks Foundation. Since 2005 St. Baldricks has donated more than 12 million dollars to the Children's Oncology Group.
Please support me and make a donation on my behalf to support childhood cancer research so that all children diagnosed with cancer will have a better chance for a cure.
Thank you in advance for your support!
Sincerely,
Steven
PS: If you want to join me, the more the merrier. Let me know and we can form a team and get our heads shaved together!