Episode 469 - Victoria McKinnon I'm Aware That I'm Rare: The Phaware® podcast

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I'm Aware That I'm Rare: the phaware® podcast « »
Episode 469 - Victoria McKinnon

6M ago 16:22

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内容由phaware global association and Phaware global association提供。所有播客内容（包括剧集、图形和播客描述）均由 phaware global association and Phaware global association 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。

Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make the difficult decision to remove care. Victoria emphasizes the importance of communication and honesty from healthcare professionals, as well as the support and knowledge gained from joining online support groups. She also discussing her fundraising efforts to support research and find solutions for children with PH. Learn more about Victoria’s fundraising efforts: www.withlovefromowen.com

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com

… continue reading

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Artwork

Episode 469 - Victoria McKinnon

I'm Aware That I'm Rare: the phaware® podcast

0-10 subscribers

published 6M ago

分享

MP3•单集首页

内容由phaware global association and Phaware global association提供。所有播客内容（包括剧集、图形和播客描述）均由 phaware global association and Phaware global association 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。

Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make the difficult decision to remove care. Victoria emphasizes the importance of communication and honesty from healthcare professionals, as well as the support and knowledge gained from joining online support groups. She also discussing her fundraising efforts to support research and find solutions for children with PH. Learn more about Victoria’s fundraising efforts: www.withlovefromowen.com

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com

… continue reading

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