Artwork

内容由Jessica Temple提供。所有播客内容(包括剧集、图形和播客描述)均由 Jessica Temple 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal
Player FM -播客应用
使用Player FM应用程序离线!

Lindsay Passodelis' Experience Growing Up With CLOVES Syndrome

33:36
 
分享
 

Manage episode 439173292 series 2905833
内容由Jessica Temple提供。所有播客内容(包括剧集、图形和播客描述)均由 Jessica Temple 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal

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

  continue reading

100集单集

Artwork
icon分享
 
Manage episode 439173292 series 2905833
内容由Jessica Temple提供。所有播客内容(包括剧集、图形和播客描述)均由 Jessica Temple 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal

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

  continue reading

100集单集

همه قسمت ها

×
 
Loading …

欢迎使用Player FM

Player FM正在网上搜索高质量的播客,以便您现在享受。它是最好的播客应用程序,适用于安卓、iPhone和网络。注册以跨设备同步订阅。

 

快速参考指南