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Irish Dance Instructor Finds Comprehensive Care for Rare Genetic Disorder at Dedicated VHL Center

After undergoing surgery to address ovarian cysts, Ellen Waller, 31, wasn’t too concerned about the laboratory tests being performed on the cysts to determine their pathology and type.

“I had never had anything wrong with me and I thought I was perfectly healthy,” said the Irish dance instructor from Chicago. “It was shocking to learn I had a genetic syndrome that causes tumors to form throughout my body.”

Doctors told Waller the cysts were possibly caused by von Hippel-Lindau (VHL) disease, a genetic condition characterized by cyst and/or tumor development in up to 11 organ systems including the eyes, brain, spine, adrenal glands, kidney, pancreas and reproductive organs. In some cases, the tumors are benign (noncancerous), while in others they can be metastatic (cancerous). The rare disorder is typically first diagnosed in patients when they are young adults and often before they have any symptoms.

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