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The disease is difficult to diagnose, a classic zebra diagnosis. Most of the symptoms of this disease, including the more serious ones, are common with other disorders. Moreover, the disease is very rare. Like Lupus it can present with any of a number of symptoms, none of which is specific or unique to the disorder. It can usually only be diagnosed by noting the tumors on an MRI or CT Scan
Luckily, the disease is rarely fatal and is usually treated easily. However, it cannot be cured and treatment must focus on existing symptoms. Patients require ongoing medical care.