It doesn't help that Erdheim-Chester is notoriously difficult to diagnose and therefore, say researchers, most likely under- or mis-diagnosed. Only when there's a mass or lesion to study will pathologists look for identifying markers on cells -- if they even suspect ECD.
For those patients who are desperate to find out why they're sick and how to restore normal life, Functional Medicine, the
The following video, featuring images of Cole, was put together in 2009. For more information about Cole and his family, click