Apr 12, 2022
On this episode we have the honor of speaking with Robyn A. Maguire. She is a mother to 3 wonderful children. Her oldest is learning how to drive and excelling in her academics as a freshman in high school. Her middle child’s super into sports and music. Right now he’s teaching himself how to play the guitar. Her youngest son Zeke, smiles like sunshine, he warms the room. Funny, because his condition, Shapiro’s syndrome gives him hypothermia. Along with the joy of being their mom, Robyn is a bartender, student, enjoys yoga, and is a music enthusiast. She loves to see live music and Zeke’s dad shares the same passion. She is sharing Zeke's story so others with this condition will not feel so alone.
Shapiro syndrome is an extremely rare disorder consisting of paroxysmal hypothermia (due to hypothalamic dysfunction of thermoregulation), hyperhydrosis (sweating), and agenesis of the corpus callosum with onset typically on adulthood. The disease affects about 50 people worldwide. The duration and frequency of the episodes vary from person to person, with some episodes lasting hours to weeks and occurring from hours to years. Very little is known about the disease due to the small number of people affected.