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

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

3 Favorites

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
More Information

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 114 - Guillermo Young, MD

11/23/2017
More
Dr. Young graduated from the Univ Nac Mayor De San Marcos, Fac De Med, Lima, Peru in 1967. With more than 50 years experience, Dr. Young is the oldest pediatric cardiologist practicing in Los Angeles. He is affiliated with Ronald Reagan UCLA Medical Center. Dr. Young discusses the history of the cardiac catheterization. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube &...

Duration: 00:15:41


Episode 113 - Tamara Norton, CCN

11/20/2017
More
Tamara Norton, CCN from UC San Diego Medical Center discusses a CTEPH patients journey from evaluation through PTE surgery. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin @phaware #phaware #CTEPH

Duration: 00:04:57


Episode 112 - Steve Mathai, MD

11/16/2017
More
Dr. Stephen Mathai is an Associate Professor of medicine at the Johns Hopkins University School of Medicine. His areas of clinical expertise include pulmonary disease and critical care medicine. His research interests include scleroderma-associated pulmonary hypertension, idiopathic pulmonary fibrosis and pulmonary complications of connective tissue disease. Dr. Mathai discusses how scleroderma increases your risk of the development of pulmonary hypertension. Dr. Mathai discusses clinical...

Duration: 00:06:45


Episode 111 - Steve Mathai, MD

11/13/2017
More
Dr. Stephen Mathai is an assistant professor of medicine at the Johns Hopkins University School of Medicine. His areas of clinical expertise include pulmonary disease and critical care medicine. His research interests include scleroderma-associated pulmonary hypertension, idiopathic pulmonary fibrosis and pulmonary complications of connective tissue disease. Dr. Mathai discusses how scleroderma increases your risk of the development of pulmonary hypertension. Learn more about pulmonary...

Duration: 00:11:37


Episode 110 - Vic Tapson, MD

11/9/2017
More
Victor F. Tapson, MD, FCCP, FRCP from Cedars-Sinai Medical Group discusses the keys to a proper CTEPH diagnosis. Dr. Tapson also talks about the importance of the CTEPH National Proceedings Conference taking place 11/9-11/10 at UCSD. www.cteph2017.com Dr. Tapson has devoted his medical career to patient care, research, and teaching in pulmonary hypertension (PH) and pulmonary embolism. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware®...

Duration: 00:07:35


Episode 109 - Connie Sherwood, CN

11/6/2017
More
Connie Sherwood, CN from UC San Diego Medical Center discusses how patients get their life back post PTE surgery. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin @phaware #phaware #CTEPH

Duration: 00:04:12


Episode 108 - John Hess

11/2/2017
More
John Hess is one of phaware global association’s co-founders. He and his wife Seema are caregivers to their son, Iain, who was diagnosed with pulmonary hypertension at age 5. Iain is a recent recipient of a double lung transplant. With a background in engineering and technology, John details phaware’s Walk.Talk.Track.™ pulmonary hypertension mobile research application being developed to determine the quality of life of patients living with PH. Learn more about pulmonary hypertension at...

Duration: 00:08:07


Episode 107 - Tim Smith

10/30/2017
More
Pulmonary hypertension patient, Tim Smith was diagnosed in October 2014. On the third anniversary of his PH diagnosis, Tim shares his thoughts on clinical trials and getting the word out to help doctors and patients be more aware so that PH patients get diagnosed quicker. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin @phaware #phaware

Duration: 00:04:35


Episode 106 - Joanne Sperando

10/26/2017
More
Joanne Sperando lives in North Babylon, NY and was the third person in her family to be diagnosed with Pulmonary Hypertension (PH). Joanne’s mother lost her 23-year-old sister Josephine to PH in 1963. Joanne’s brother John was diagnosed in 1995 and passed in 2015 and she received her diagnosis in 1998. Joanne formed and currently co-leads a support group and she served two terms on the board of trustees of the Pulmonary Hypertension Association. Joanne has testified in Washington for PH...

Duration: 00:06:36


Episode 105 - Seema Hess

10/23/2017
More
Seema Hess and her husband John (one of phaware’s co-founders) are caregivers to their son, Iain, who was diagnosed with pulmonary hypertension at age 5. Seema shares a raw account of Iain's recent double lung transplant surgery. She details the four months Iain spent in ICU. Seema also shared this experience through a Children’s Organ Transplant Association blog: cotaforiainh.com/blog. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware®...

Duration: 00:30:11


Episode 104 - Juan Alejos, MD

10/19/2017
More
Dr. Juan Alejos currently serves as the Medical Director of the Pediatric Heart Transplant/Cardiomyopathy Program at Mattel Children’s Hospital at UCLA. He is also the founder of Hearts With Hope, a non-profit, whose mission is to provide medical, dental and humanitarian assistance to children with congenital heart disease in the underserved global community. Dr. Alejos discusses the work of Hearts with Hope, whose next mission takes place Oct 30 to Nov 4 in Peru. Learn more about...

Duration: 00:08:55


Episode 103 - Wayne Beall

10/16/2017
More
Wayne Beall is a CTEPH (Chronic thromboembolic pulmonary hypertension) patient from Idaho. Wayne’s work and "wondering" took him through many Western states, where he learned the love of skiing, but soon symptoms kept him off mountains. Misdiagnosis is common with pulmonary hypertension and because of that, Wayne got a lot worse before he found a proper PH team. Wayne discusses his multi-year journey that led to a proper diagnosis. Learn more about pulmonary hypertension at...

Duration: 00:07:40


Episode 102 - Justin Martinez

10/12/2017
More
Justin Martinez is an identical twin diagnosed with Pulmonary Hypertension in 2002 at 14 years old. He is a double lung transplant survivor since 2005. Justin, now 29, discusses his history with PH and life after transplant. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin @phaware #phaware

Duration: 00:07:20


Episode 101 - Christine Kramer

10/9/2017
More
Pulmonary Hypertension patient Christine Kramer discusses developing PH during pregnancy, motherhood, clinical trials &the importance of self-advocacy. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin @phaware #phaware

Duration: 00:06:53


Episode 100 - Victor Test, MD (Part 2 of 2)

10/5/2017
More
Victor J. Test, MD is a professor of medicine at Duke University School of Medicine. He treats patients with pulmonary vascular diseases including high blood pressure of the lungs (pulmonary hypertension) and unresolved blood clots in the lungs (pulmonary embolism). His research specifically focuses on chronic thromboembolic pulmonary hypertension. In this episode, Dr. Test discusses some of the tests that are used to assess a patient's exercise capacity, and how it relates to the...

Duration: 00:05:43


Episode 99 - Victor Test, MD (Part 1 of 2)

10/2/2017
More
Victor J. Test, MD is a professor of medicine at Duke University School of Medicine. He treats patients with pulmonary vascular diseases including high blood pressure of the lungs (pulmonary hypertension) and unresolved blood clots in the lungs (pulmonary embolism). His research specifically focuses on chronic thromboembolic pulmonary hypertension. In this episode, Dr. Test discusses the importance of a thorough diagnostic evaluation and the types of tests that are done to evaluate people...

Duration: 00:11:38


Episode 98 - Ashley Schroeder

9/28/2017
More
Ashley Schroeder is a wife, mother of two daughters and familial pulmonary hypertension patient of five years. Ashley discusses being diagnosed, improving beyond what doctors expected, the importance of finding the right combination of medication and why raising awareness of pulmonary hypertension is so important. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin...

Duration: 00:09:11


Episode 97 - Brian Hanna, MD

9/25/2017
More
Brian D. Hanna, MDCM, PhD, FAAP, FACC, is a board-certified cardiologist and Director of the Section of Pulmonary Hypertension at Children's Hospital of Philadelphia. His research Interests include: natural history of pediatric pulmonary hypertension, treatment trials for pulmonary hypertension, and the role of pulmonary hypertension in congenital heart disease. Dr. Hanna discusses pediatric cardiology and innovative pulmonary hypertension research. Learn more about pulmonary...

Duration: 00:05:38


Episode 96 - Katie Davis

9/21/2017
More
The Race Against PH was started in 2001 by Katie Davis, Eddie Davis and Paige Dunn to promote awareness to the devastating disease Katie’s mother was battling. The 17th Annual Race Against PH 5k takes place on November 5th, 2017 at 9 a.m. at Stanford’s Pac-12 Plaza. Proceeds benefit the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford and support research and efforts dedicated to finding new treatments and, ultimately, a cure for PH. Learn more about pulmonary...

Duration: 00:08:03


Episode 95 - Colleen Schnell

9/18/2017
More
Colleen Schnell is a long term pulmonary hypertension patient who lives in Niagara Falls, NY. She is the support group leader of the Buffalo Niagara PHriends group and moderator of two PH-related support groups on Facebook. Colleen likes to volunteer at a nursing home, exercise, paint and make jewelry, and spends quality time with her family and friends. One of Colleen's favorite phrases is "Always Have Hope." Learn more about pulmonary hypertension at phaware365.global. Never miss an...

Duration: 00:06:40

See More