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

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

Health & Wellness Podcasts

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

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Location:

United States

Description:

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

Twitter:

@phaware

Language:

English

Contact:

8183953529

Episodes

Episode 434 - Joan Gibson

10/2/2023
Canadian pulmonary hypertension care partner, Joan Gibson discusses her daughter Jane's path to diagnosis, decision to embrace surrogacy, and her road to recovery after two PH related strokes. 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

Duration:00:14:52

Episode 433 - Jo-Anne Mainwood

9/25/2023
Pulmonary hypertension patient, Jo-Anne Mainwood, is a Canadian school teacher who couldn’t keep up with her students, friends and family. After a long journey of misdiagnosis, Jo-Anne details why PH is not a one-size-fits-all disease. 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

Duration:00:07:52

Episode 432 - Jennifer Gendron

9/18/2023
On the 14th anniversary of her son's life-saving lung transplant, Canadian pulmonary hypertension care partner, Jennifer Gendron discusses how the PH landscape has changed over the past 20 years and life post-surgery. 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

Duration:00:12:43

Episode 431 - Don Downey

9/11/2023
Canadian pulmonary hypertension care partner, Don Downey, discusses his wife Kathy's road to diagnosis -- which was confirmed on Friday March 13, 2020 -- the day the world shut down and how they navigated her new normal during lockdown. 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

Duration:00:09:06

Episode 430 - Carol Doyle Ploughman

9/4/2023
15 years ago, after the birth of her 2nd child, Canadian pulmonary hypertension patient, Carol Doyle Ploughman was told she had only two years to live. Now, a decade and a half later, on her birthday, Carol discusses how she has maintains a healthy and active lifestyle and the importance of clinical trials for PH patients. 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

Duration:00:14:57

Episode 429 - Colleen Carroll

8/28/2023
Canadian pulmonary hypertension patient, Colleen Carroll was wrongly diagnosed with severe anxiety and asthma before she ever heard the words "pulmonary hypertension." Now she faces each day with a positive attitude, a good diet, exercise regimen, and the power of her faith. 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

Duration:00:06:45

Episode 428 - Jane Macleod

8/21/2023
Canadian pulmonary hypertension and scleroderma patient, Jane Macleod is a retired RN. She discusses reasons for her delayed diagnosis, the importance of pulmonary rehab, and the challenges of living a her new normal. 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

Duration:00:06:54

Episode 427 - Vanda McLean

8/14/2023
Canadian pulmonary hypertension patient, Vanda McLean was forced into early retirement due to her diagnosis. She discusses how she navigates depression, the importance of support and how she faces an uncertain future. 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

Duration:00:10:50

Episode 426 - Jas James

8/7/2023
Long-term Canadian pulmonary hypertension and lupus survivor, Jas James discusses survivor's guilt and the importance of both emotional and physical support from friends, family and fellow patients. 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

Duration:00:06:14

Episode 425 - Susan Cosenzo

7/31/2023
Canadian pulmonary hypertension patient, Susan Cosenzo discusses her PH diagnosis, the struggles of being a single mom living in government housing and how she overcame alcohol addiction. 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

Duration:00:10:38

Episode 424 - Kaitlyn Salonga

7/24/2023
Canadian pulmonary hypertension patient, Kaitlyn Salonga discusses the impact PH has had on her job, her relationship and her mental wellbeing. 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

Duration:00:08:35

Episode 423 - Jane Sernoskie

7/17/2023
PHA Canada Patient Ambassador, Jane Sernoskie discusses her pulmonary hypertension diagnosis and becoming a mom through surrogacy. 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

Duration:00:05:38

Episode 422 - Kristine Ritchie

7/10/2023
Canadian Pediatric PH Care Partner, Kristine Ritchie, discusses her son Brendan's 10 plus year journey with pulmonary hypertension, the importance of self-care and the impact PH has on her entire family. 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

Duration:00:11:16

Episode 421 - Eric Austin, MD

6/26/2023
Eric Austin is the Director of the Vanderbilt Pediatric Pulmonary Hypertension Program at Vanderbilt University Medical Center’s Monroe Carell Jr. Children's Hospital. He is also a member of the adult program’s Vanderbilt Pulmonary Hypertension Clinical and Research Program, with whom he leads and/or participates in various translational research studies. In this episode, Dr. Austin discusses pulmonary hypertension associated with developmental lung disorder. 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 #phawareMD #PPHNet @PPHNet @VUMCchildren

Duration:00:16:10

Episode 420 - Lew Romer, MD

6/19/2023
Lew Romer, MD is a Professor of Anesthesiology and Critical Care Medicine, Johns Hopkins Medicine in Baltimore, Maryland. Dr. Romer discusses the importance of clinical trials in the pediatric pulmonary hypertension population and his work on the PPHNet's Kids MoD PAH Trial: Mono- vs. Duo-Therapy for Pediatric PAH patients. 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 #phawareMD #PPHNet @PPHNet @HopkinsMedicine Learn more about the Kids MoD PAH Trial: https://clinicaltrials.gov/ct2/show/NCT04039464

Duration:00:15:52

Episode 419 - Brin Marks

6/12/2023
PHA Canada Ambassador and pulmonary arterial hypertension patient, Brin Marks, discusses her road to diagnosis, her strategies for staying positive and why she wants to be a voice for change for pediatric PH patients everywhere. 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

Duration:00:10:02

Episode 418 - Sanjay Mehta, MD

6/5/2023
PHA Canada Board Director, Sanjay Mehta, MD, on 15 years of inspiring achievements in advocacy, research, and community support for the 2023 National PH Community Conference taking place June 9-10 in Ottawa, ON and what lies ahead for the future. PHA Canada invites you to celebrate 15 years of inspiration at this year’s National Community Conference June 9-10! Can’t join in person? Register as a virtual participant! 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

Duration:00:15:49

Episode 417 - Nicole Dempsey

5/29/2023
Pulmonary Hypertension patient and PHA Canada Board Chair, Nicole Dempsey, celebrates 15 years of inspiring achievements in advocacy, research, and community support for the 2023 National PH Community Conference taking place June 9-10 in Ottawa, ON. PHA Canada invites you to celebrate 15 years of inspiration at this year’s National Community Conference June 9-10! Can’t join in person? Register as a virtual participant! 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

Duration:00:06:42

Episode 416 - Katharine Clapham, MD

5/22/2023
Katharine Clapham, MD is an Assistant Professor in the Division of Cardiovascular Medicine at University of Utah Health. @UofUHealth In this episode, Dr. Clapham discusses methamphetamine-associated pulmonary arterial hypertension. 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

Duration:00:08:51

Episode 415 - Uli Campbell

5/15/2023
In this episode, newly diagnosed pulmonary arterial hypertension patient, Uli Cambell, discuss her rollercoaster of emotions and how educating herself about PH has given her hope in navigating and advocating for her rare disease. 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

Duration:00:07:08

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