The extremely rare condition of vanishing bone disease is sometimes called Gorham's disease, after L. W. Gorham who joined with A. P. Stout in describing the condition in an October 1955 issue of the American version of the Journal of Bone and Joint Surgery. The disease can effect any bone and produces exactly the symptom its name implies. No cure for vanishing bone disease exists but some medications can slow the progression of the disease.
Cause and Description
Most cases of vanishing bone disease have no known cause. The disease usually appears during childhood or early adulthood and may manifest itself after a patient suffers a bone injury. When the disease begins, a tumor-like growth of blood or lymph vessels called an angioma starts overgrowing and replacing bone mass. The angioma typically replaces only a single bone but may grow into surrounding soft tissue such as muscles, weakening those structures.
Symptoms
People with vanishing bone disease have, essentially, a single symptom: The affected bone disappears over the course of many years and sometimes decades. Patients feel no pain from either the disappearance of the bone or the growth of the angioma. However, the affected bone may become progressively weaker as it vanishes. This can make patients with vanishing bone disease more prone to fractures.
Bones Affected
A review article published in the March 2008 issue of the journal Orthopedics categorizes every one of the 191 cases of bone vanishing disease that clinicians have reported in scientific literature since 1838. Bones of the face, shoulder, arms and hands have most often been affected by the disease. Cases of vanishing bone disease have also involved the skull, spine, chest, pelvis, legs, feet and toes.
Possible Complications
When a bone vanishes from a patient's body, the patient can be left with a deformity, disfigurement or disability. For instance, a patient who loses a skull plate or a cheek bone will have a facial disfigurement, while a patient who loses a spinal vertebra could have limited mobility. A vanishing bone disease fact sheet published by the Medical College of Wisconsin notes that patients who lose bone around vital organs, such as a rib shielding a lung, can experience damage to the formerly protected organ. The destruction of skull plates and the growth of an angioma into the brain can prove fatal.
Treatments
Vanishing bone disease stops progressing in many patients after all or most of the affected bone has disappeared. Doctors have tried many treatments to slow or reverse vanishing bone disease before it stops on its own, but with little success. A list of attempted therapies, reproduced in the Internet Journal of Orthopedic Surgery, includes: "surgical excision with bone grafting and prosthetic replacement, radiation, and the administration of vitamin D, androgens, amino acids, adrenal extracts, calcium, fluoride, calcitonin and bisphosphonates." Only radiotherapy, calcitonin (e.g., Miacalcin from Novartis) and bisphosphonates such as alendronate (e.g., Fosamax from Merck) and ibandronate (e.g., Boniva from Roche) have proven somewhat effective. These treatments work best when administered to the youngest patients.
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