Rare genetic disorder strikes Arizona family

May 19, 2009

By hammersmith

[Source: St. Joseph’s Hospital] – For sixteen years, Alma Mendoza has been waging a battle against tuberous sclerosis (TS), a rare disorder that has caused her and her children to develop multiple tumors.

Alma was diagnosed with the genetic condition during her second pregnancy and after her first pregnancy resulted in a stillbirth because of the disorder. Her twin boys, Jose and Juan, were both born with TS and benign tumors in their brains, lungs and kidneys. The boys underwent their first surgery – heart surgery – at four days of age. Alma’s daughter, Tiffany, was also diagnosed with TS and has tumors located in her brain, heart and nose. The disease has been devastating to the family. Juan passed away from the disorder at the age of 14. Jose, now 16, and Tiffany, 14, are both cognitively delayed and Jose suffers from seizures as a result of the condition.

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