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

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

Health & Wellness Podcasts

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday. 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

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday. 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

Location:

United States

Description:

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday. 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 309 - Carys and Paisley Dempsey

2/20/2020
Sisters Paisley Dempsey (10) and Carys Dempsey (11) discuss their mother Nicole’s PH diagnosis and their roles as caregivers. Nicole served as a PHA Canada Ambassador from 2014-16, before being elected to the Board of Directors in 2017. She was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in 2013. Prior to her diagnosis, Nicole worked as an elementary school teacher for 12 years. The Dempsey family resides in Cambridge, Ontario. Learn more about pulmonary hypertension...

Duration:00:04:19

Episode 308 - Alex Cowie

2/17/2020
Alex Cowie lives in the South West Coast of Scotland, UK with his partner Jo. Alex was diagnosed with Hereditary Pulmonary Arterial Hypertension in August 2016. He has participated in 4 clinical trials to date. Alex's daughter, Erika, lost her battle with PH in 2016 following her 18th birthday. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube &...

Duration:00:14:34

Episode 307 - Cheryl Wegener

1/30/2020
We are heartbroken that our friend, Madison Wegener, lost her battle with PH on January 19, 2020. In this episode, Madison 's mother, Cheryl discusses the importance of early diagnosis, the impact PH has on the entire family how journaling became a teaching tool for everyone in their lives. Please join the Wegener Family for "Madison's 5K" on May 16 in Dewitt, MI to honor Madison's legacy and making Madison's dream come true by ending the suffering of these PH kids and finding a cure. You...

Duration:00:03:06

Episode 306 - Madison Wegener

1/27/2020
We are heartbroken that our friend, Madison Wegener, lost her battle with PH on January 19, 2020. In this episode, Madison discusses the importance of awareness, research and why she loves PH Conference. Please join the Wegener Family for "Madison's 5K" on May 16 in Dewitt, MI to honor Madison's legacy and making Madison's dream come true by ending the suffering of these PH kids and finding a cure. You can also read more about Madison on her CaringBridge page. Learn more about pulmonary...

Duration:00:02:55

Episode 305 - Harold Palevsky, MD

12/5/2019
Harold I. Palevsky, MD is a Professor of Medicine at the Perelman School of Medicine at the University of Pennsylvania and the Chief of Pulmonary, Allergy and Critical Care Medicine at the Penn Presbyterian Medical Center in Philadelphia. He also heads the Pulmonary Vascular Disease Program at that campus. For the past 25 years, he has been recognized as one of Philadelphia Magazine’s and America’s Top doctors. In this episode, Dr. Palevsky discusses the importance of clinical trials in...

Duration:00:21:21

Episode 304 - Dale Dedrick

12/2/2019
Dale Dedrick is a retired orthopedic surgeon who was diagnosed with lupus and pulmonary hypertension. In this episode, Dale discusses how her illness forced her to retire and how her love of horseback riding helped her make the United States Paralympic Equestrian Team in 2012. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage...

Duration:00:08:01

Episode 303 - Raymond Benza, MD

11/28/2019
Dr. Raymond Benza is a cardiologist in Pittsburgh, Pennsylvania and is affiliated with multiple hospitals in the area, including Alle-Kiski Medical Center and Allegheny General Hospital. He has been in practice for more than 20 years. In this episode, Dr. Benza discusses the importance of clinical trials in patients with pulmonary hypertension including a new molecule that's on the forefront of treatment for pulmonary arterial hypertension called PB1046. Learn more about pulmonary...

Duration:00:12:26

Episode 302 - Dawn Meador

11/25/2019
In this episode long-term pulmonary hypertension patient, Dawn Meador discusses PH diagnosis as well as her decision to adopt a child, post dx with her third husband. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials

Duration:00:10:47

Episode 301 - Hall Skåra

11/21/2019
Hall Skåra is a pulmonary hypertension patient from Norway. He became part of PHA Europe’s staff after his diagnosis. He has helped develop their “White Spots” program, which establishes new PH patient associations in countries where they don’t exist. In this episode, Hall discusses the first ever PAH Patient Charter that was launched on November 12, 2019 to coincide with PH Awareness Month. The Charter was facilitated and sponsored by Actelion, a Janssen Pharmaceutical Company of Johnson &...

Duration:00:05:41

Episode 300 - Iain Hess

11/18/2019
In our 300th episode, Iain Hess discusses his lifesaving double-lung transplant he received two years ago on January 17, 2017. Iain is a former pulmonary hypertension patient from Colorado who was diagnosed at age 5. This episode was recorded LIVE in San Francisco, CA. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a...

Duration:00:15:02

Episode 299 - Wendy Gin-Sing, RN

11/14/2019
Wendy Gin-Sing RN, MSc, MRes, is an advanced nurse practitioner with the Pulmonary Hypertension Service at the Hammersmith Hospital in London. In this episode, she discusses the first ever PAH Patient Charter that was launched on November 12, 2019 to coincide with PH Awareness Month. The Charter was facilitated and sponsored by Actelion, a Janssen Pharmaceutical Company of Johnson & Johnson and a PAH-expert Steering Committee made up of patients, patient advocates and healthcare...

Duration:00:06:08

Episode 298 - Michelle Sweitzer

11/11/2019
In this episode, pulmonary hypertension patient, Michelle Sweitzer discusses her illness and why she chose to adopt. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me

Duration:00:08:30

Episode 297 - Elsa Garza, DNP

11/7/2019
Elsa Garza, DPN specializes in Pulmonary Medicine and has sub-specialized in Pulmonary Hypertension since 2009. Caring for patients with Pulmonary Hypertension is her passion. In this episode, she discusses addressing anxiety or depression that may come with a PAH diagnosis. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage...

Duration:00:05:45

Episode 296 - Connie Siskowski, RN, PhD

11/4/2019
Connie Siskowski, RN, PhD from American Association of Caregiving Youth discusses youth caregivers who sacrifice their education, health, well-being and childhood to provide care for ill or disabled family members. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials...

Duration:00:12:36

Episode 295 - Michael Keller, MD

10/31/2019
Michael Keller, MD is a Pulmonologist and Pulmonary Hypertension specialist with Suburban Lung Associates in Elk Grove Village, IL. He is medical director of the AMITA Health Pulmonary Hypertension program. In this episode, Dr. Keller discusses the importance of exercise in Pulmonary Hypertension. His clinical interests include the full spectrum of pulmonary vascular diseases with a focus on pulmonary hypertension in chronic lung disease. He serves as medical director of the Alexian...

Duration:00:08:45

Episode 294 - Hilary DuBrock, MD

10/28/2019
Dr. Hilary DuBrock is an Assistant Professor of Medicine with joint appointments in Pulmonary and Critical Care Medicine and Cardiovascular Medicine from Mayo Clinic in Rochester, MN. In this episode, she discusses the importance of pulmonary rehabilitation. Dr. DuBrock’s clinical and research interests include pulmonary hypertension (PH) and pulmonary vascular complications of liver disease. The goal of Dr. DuBrock’s research is to improve the quality of life of patients with PH and to...

Duration:00:07:55

Episode 293 - Ryan Bonvillain, PhD & Kelly Guthrie, MS

10/24/2019
Ryan W. Bonvillain, PhD is the Senior Manager for Tissue Engineering, Research Regenerative Medicine at United Therapeutics Corporation. Kelly Guthrie, MS is the Associate Director BioScaffolds, Regenerative Medicine at United Therapeutics Corporation. In this episode Ryan and Kelly discuss work that UT is doing in the realm of regenerative medicine for the purpose of increasing the number of lungs that are available for organ transplant for patients who need them. Learn more about...

Duration:00:13:49

Episode 292 - Richard Pietroski

10/21/2019
Richard Pietroski is President of Lung Bioengineering at United Therapeutics Corporation. Richard discusses the advancements his organization has made in ex-vivo lung perfusion (EVLP). His team’s revolutionary work has kept lungs outside the body for up to 22 hours, whereas in the past, lungs needed to be transplanted within six hours. Lung Bioengineering’s goal is to double the number of lungs transplanted annually in the U.S. Learn more about pulmonary hypertension trials at...

Duration:00:08:38

Episode 291 - Patti Flanagan

10/17/2019
PH and Scleroderma patient, Patricia Flanagan discusses the bumpy roller coaster ride that led to her diagnosis and life with left heart disease. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me

Duration:00:10:24

Episode 290 - Taryn Petry

10/14/2019
Pediatric pulmonary Hypertension patient, Taryn Petry talks about her passion for Irish dancing and how she grapples with restricting herself in certain activities. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @antidote_me

Duration:00:03:08