What types of doctors or specialists are best suited for working with me on this disease?

Because bone is the most commonly involved tissue, most people will need an orthopedic surgeon. If bones in the skull are involved, an ear, nose, and throat (ENT) doctor may be needed. If endocrine organs are involved, an endocrinologist may be needed. Depending on the severity of the condition, a team of medical professionals and service providers may be needed. If this is the case, it is often best to try and get one doctor function as the team leader and make sure communication between the doctors is adequate.