Raising Awareness of Ivemark Syndrome

Oct 1, 2019 · 30m 8s
Raising Awareness of Ivemark Syndrome
Description

If you've ever wondered what Ivemark Syndrome is, you need to listen to this program! Ivemark Syndrome is a very rare constellation of birth defects which typically include malformations of...

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If you've ever wondered what Ivemark Syndrome is, you need to listen to this program! Ivemark Syndrome is a very rare constellation of birth defects which typically include malformations of the heart.

Julia Mayfield is and adult born with a rare genetic condition called Ivemark Syndrome. According to the National Organization for Rare Disorders, Ivemark Syndrome is comprised of: 1) an absent or underdeveloped spleen, 2) cardiovascular anomalies and 3) abnormal placement of the organs in the chest and or abdomen. Julia’s heart is on the right side of her chest and she is missing her spleen. By the time she was nine, she had been through four open-heart surgeries, the final of which caused a massive stroke post-op. She also developed severe scoliosis and required surgery. She is joining us today to raise awareness of Ivemark Syndrome and share her experiences of growing up and adulthood with this condition.

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Author Anna Jaworski
Organization Anna Jaworski
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