Diagnosed With Langerhans Cell HistiocytosisHello Everyone,
I thought I would reach out to others that have this rare disease. I was diagnosed about a year ago and have been very fortunate to have experienced only skin lesions at this time. I find myself more frustrated that my doctors have no experience dealing with this disease and seem to be almost clueless when I have questions. I find myself questioning when I have headaches and bone pain....I am terrified of voicing the pain that it could bring to light something more than arthritis or a migraine. Has anyone here experienced the skin lesions?