I'm Aware That I'm Rare: the phaware® podcast  By  cover art

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

By: phaware global association
  • Summary

  • I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global
    Copyright 2021 phaware global association. All Rights Reserved.
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Episodes
  • Episode 467 - Dr. Jason Weatherald
    May 6 2024

    Dr. Jason Weatherald, a pulmonologist at the University of Alberta, discusses a study on the socioeconomic burden of pulmonary arterial hypertension (PAH) in Canada. The study, conducted through PHA Canada, surveyed PAH patients and their caregivers to understand how the disease affects their ability to work and perform daily activities. The results showed that a significant number of PAH patients were unable to work or had limited career options due to the disease. The study also highlighted the impact of PAH on caregivers, with many having to assist patients with daily activities. The findings emphasize the need for healthcare professionals to discuss the implications of PAH on patients' ability to work and access support.

    Read the report here: https://phacanada.ca/burden

    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 @phacanada #phawareMD

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    9 mins
  • Episode 466 - Karen Martinez
    Apr 29 2024

    Karen Martinez, a mother from Eastvale, California, shares her experience with Camp del Corazon, a camp for children with congenital heart defects and lung disease. Her daughter attended camp for the first time at the age of seven and has been going every summer since. The camp offers events throughout the year and fosters lifelong connections among the campers.

    #campdelcorazon #heartcamp #camplove #supportagoodcause

    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

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    8 mins
  • Episode 465 - Joellen Brown
    Apr 22 2024

    In this episode, Joellen Brown shares her experience with pulmonary hypertension (PH) on the 15th anniversary of her diagnosis. Joellen was born with a hole in her heart and had her first open heart surgery at the age of two and a half. She believes she may have had PH since birth, but was not aware of it due to limited research in the 1950s. Joellen emphasizes the importance of having a supportive medical team and family, as well as being proactive in advocating for one's own health. She encourages newly diagnosed individuals to seek out support groups and emphasizes the need for early and appropriate treatment.

    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

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    9 mins

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