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Lindsay Passodelis' Experience Growing Up With CLOVES Syndrome
Manage episode 439173292 series 2905833
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Episode 113: Lindsay Passodelis' Experience Growing Up With CLOVES Syndrome
In this episode, guest Lindsay shares her experience growing up with CLOVES syndrome. CLOVES is a rare overgrowth syndrome with vascular anomalies. Congential lipomatous overgrowth vascular malformation epidermal nevus spinal skeletal anomalies (CLOVES). Everyone has different symptoms, of which there are many. It is caused by a genetic mutation in PIK3CA gene. It is not hereditary. Medical exams would pick up the syndrome. You can also undergo genetic testing to confirm the syndrome. Treatment includes surgery, sclerotherapy, and various medications. Lindsay showed signs of CLOVES at birth. However, they misdiagnosed her as having Proteus Syndrome. Once she was finally correctly diagnosed, she was really relieved. Lindsay talks about her experience with CLOVES growing up. She discussed complications, difficulty in daily life with CLOVES, coping, and medication trials.
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Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
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