Lindsay Passodelis' Experience Growing Up With CLOVES Syndrome

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. Links: Meet The PROS Comic Book Understanding PROS Instagram Blog     Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook! We are also on Pinterest!     Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)   Hosted by: Jessica Temple and Lewis Temple   Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple