Published: 13/03/2016 Tags: Ehlers-Danlos in the News

Westfield Mom Helps Host Fundraiser for Son’s Rare Disorder

Westfield mom Syndi Lipschutz hopes for an end to Postural Orthostatic Tachycardia Syndrome, a life-altering condition that has plagued her son through his teenage years. Together with three other New Jersey moms with family members affected by the disorder (Kim DiBona, Susan Finnegan and Catherine Morrison), she is helping to organize an “Eat Dance Laugh” fundraiser for Dysautonomia International on April 8 in Old Bridge.

“Almost seven years ago our son Ryan became very ill and went on to be diagnosed in July of 2009, just before his 13th birthday, with a form of dysautonomia, which essentially is a dysfunction of the autonomic nervous system, known as Postural Orthostatic Tachycardia Syndrome,” Lipschutz said. “The road to diagnosis was long because many doctors were not familiar with the condition. In fact, he has had to travel as far as the Mayo Clinic in Minnesota for his medical care of his POTS and associated illnesses of Ehlers Danlos Syndrome and Mast Cell Activation Disorder.”

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