The Mastocytosis Blues


29 min


She was suddenly very sick with mysterious symptoms.  Even her friends lifted an eyebrow when she insisted it had something to do with exposure to chlorine.  She was living on crackers and still couldn’t get the doctors to pay attention.

Shanti Soule reflects on trying to get a diagnosis for what turned out to be a rare and serious disease.

Shanti Soule




Plus, Carolyn Epple, living without a diagnosis after more than a decade, talks about how she dodges the mental illness label as she negotiates for medical care. And, a brief visit with Shanti Soule’s oncologist, Dr. Jeffery Ye.



A FDG positron emission tomography of an unidentified 52-year-old woman with aggressive systemic mastocytosis. (Not Shanti Soule)


Hosted & produced by Shelley Berman.


Mastocytosis is a serious disease which should be treated quickly and aggressively by a knowledgeable doctor.  If you or someone you know might have Systemic Mastocytosis, and you want more information about this disease, please contact Pushing Limits at (510) 848-6767 ext 636 or email

The Mastocytosis Society

Air date: 9-2-11
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