I'm Aware That I'm Rare: the phaware® podcast
987 episodes - English - Latest episode: 13 days ago - ★★★★★ - 14 ratingsI'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
Homepage Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed
Episodes
Episode 17 - Jenn Lalonde
December 19, 2016 10:00 - 2 minutes - 2.49 MBCanadian pulmonary hypertension patient, Jenn Lalonde discusses her road to diagnosis, the need for PH awareness and how she is using writing as a therapeutic tool that not only benefits her but others as well. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware
Gary Bruce Transcript
December 15, 2016 13:00Pulmonary hypertension and COPD patient, Gary Bruce discusses how PH has impacted his life. Gary finds strength through his faith and through the freedom of the open road to cope with his rare disease diagnosis. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware My name is Gary Lynn Bruce and I'm from Prosper, Texas. I found out, it had to be May...
Episode 16 - Gary Bruce
December 15, 2016 10:00 - 9 minutes - 9.31 MBPulmonary hypertension and COPD patient, Gary Bruce discusses how PH has impacted his life. Gary finds strength through his faith and through the freedom of the open road to cope with his rare disease diagnosis. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware
Arlene Shuler Transcript
December 12, 2016 13:00CTEPH patient Arlene Shuler shares her pulmonary hypertension diagnosis story which started as breathlessness in 2005. Arlene is a dancer and awareness ambassador, who speaks to patients, medical professionals as well as staff of pharmaceutical companies to educate people about CTEPH and PH. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware #CTE...
Episode 15 - Arlene Shuler
December 12, 2016 10:00 - 4 minutes - 4.47 MBCTEPH patient Arlene Shuler shares her pulmonary hypertension diagnosis story which started as breathlessness in 2005. Arlene is a dancer and awareness ambassador, who speaks to patients, medical professionals as well as staff of pharmaceutical companies to educate people about CTEPH and PH. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware #CTEP...
Jenny Janzer Transcript
December 08, 2016 13:00Long term survivor Jenny Janzer shares her pulmonary hypertension diagnosis story and how she has battled depression in her tween and teen years along with PH. Jenny discusses how she uses her art not only as therapy, but to express herself and raise PH awareness. Check out Jenny's Etsy profile: www.etsy.com/shop/MostPulp My name is Jenny Janzer and I'm from Hartford, Wisconsin. I was an active kid. I grew up on a lake and had like the most magical childhood of my life. At 11, I went ...
Episode 14 - Jenny Janzer
December 08, 2016 10:00 - 10 minutes - 10 MBLong term survivor Jenny Janzer shares her pulmonary hypertension diagnosis story and how she has battled depression in her tween and teen years along with PH. Jenny discusses how she uses her art not only as therapy, but to express herself and raise PH awareness. Check out Jenny's Etsy profile: www.etsy.com/shop/MostPulp Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, y...
Omar and Javier Estevez Transcript
December 05, 2016 13:00Twin brothers, Omar and Javier Estevez describe how they contracted pulmonary hypertension in the aftermath of 9-11. After their diagnosis they found hope and help from Caring Voice Coalition. These brothers also share how important it is to engage for a cure. My name is Javier Estevez and I'm from Staten Island, New York. Hi. My name is Omar Estevez and I'm from Staten Island, New York City. Javier: I'm a retired New York City police officer. I was involved, heavily involved in the ...
Episode 13 - Omar and Javier Estevez
December 05, 2016 10:00 - 8 minutes - 8.22 MBTwin brothers, Omar and Javier Estevez describe how they contracted pulmonary hypertension in the aftermath of 9-11. After their diagnosis they found hope and help from Caring Voice Coalition. These brothers also share how important it is to engage for a cure. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware
Gerry Fischer Transcript
December 01, 2016 13:00At the age of three, Gerry Fischer’s daughter Maleen was diagnosed with pulmonary hypertension and, as there was no treatment for this fatal disease at the time in Austria, the doctors sent her home. Her life expectancy was only a few years. In the twenty plus years since her diagnosis, Gerry went on to help raise over ten million dollars in research funds during his tenure as the head of the European Pulmonary Hypertension Association. Maleen, now 21, wrote a book about her PH journey wit...
Episode 12 - Gerry Fischer
December 01, 2016 10:00 - 9 minutes - 9.34 MBAt the age of three, Gerry Fischer’s daughter Maleen was diagnosed with pulmonary hypertension and, as there was no treatment for this fatal disease at the time in Austria, the doctors sent her home. Her life expectancy was only a few years. In the twenty plus years since her diagnosis, Gerry went on to help raise over ten million dollars in research funds during his tenure as the head of the European Pulmonary Hypertension Association. Maleen, now 21, wrote a book about her PH journey with...
David Grady Transcript
November 28, 2016 13:00Pulmonary Hypertension patient, David Grady is a retired police officer from Ohio. Because he lives along, David describes the importance of being your own advocate. David is also a proud member of the PH Men’s PHight Club on facebook. He discusses how PHight Club strives to be role models for the younger generation of males suffering from this rare, life-threatening disease. My name is David Grady, and I'm from Cleveland, Ohio. 2008 I had been short of breath, probably for about a year...
Episode 11 - David Grady
November 28, 2016 10:00 - 6 minutes - 15.2 MBPulmonary Hypertension patient, David Grady is a retired police officer from Ohio. Because he lives along, David describes the importance of being your own advocate. David is also a proud member of the PH Men’s PHight Club on facebook. He discusses how PHight Club strives to be role models for the younger generation of males suffering from this rare, life-threatening disease. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. ...
Patricia Harrington Transcript
November 24, 2016 13:00Patricia Harrington is a long-term pulmonary hypertension survivor. Patricia discusses how she has battled her rare, life-threatening diagnosis by doing as much as she can to enjoy life. Though she has had to compromise her love for country dancing and exploring lighthouses, Patricia’s positive outlook and passion for PH awareness motivates to do everything possible to educate medical professionals and members of her community. My name is Patricia Harrington and I’m from Glendale, Arizona...
Episode 10 - Patricia Harrington
November 24, 2016 10:00 - 3 minutes - 8.42 MBPatricia Harrington is a long-term pulmonary hypertension survivor. Patricia discusses how she has battled her rare, life-threatening diagnosis by doing as much as she can to enjoy life. Though she has had to compromise her love for country dancing and exploring lighthouses, Patricia’s positive outlook and passion for PH awareness motivates her to do everything possible to educate medical professionals and members of her community. Learn more about pulmonary hypertension at phaware365.glob...
Cynthia Sandoval and Sylvia Lakalaka Transcript
November 21, 2016 13:00Sisters Cynthia Sandova and Sylvia Lakalaka describe the difficult road that led to Sylvia’s pulmonary hypertension diagnosis. They discuss their plans to bring #phaware-ness around the world and a project they want to start in hope of making life easier for children who suffer from this rare disease. Cynthia: My name is Cynthia Sandova and I'm from Parlor, California. Sylvia: My name is Sylvia Lakalaka and I'm from Exetor, California. In 2013 I was diagnosed with IPAH and it came...
Episode 9 - Cynthia Sandoval and Sylvia Lakalaka
November 21, 2016 10:00 - 8 minutes - 20.6 MBSisters Cynthia Sandova and Sylvia Lakalaka describe the difficult road that led to Sylvia’s pulmonary hypertension diagnosis. They discuss their plans to bring #phaware-ness around the world and a project they want to start in hope of making life easier for children who suffer from this rare disease. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #pha...
Greg Fuller Transcript
November 17, 2016 13:00He used to climb mountains, but now CTEPH patient Greg Fuller is being forced to set new goals for himself because of his rare illness. Though life has dealt him a bad hand, Greg is redefining what is possible in spite of PH. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware #CTEPH My name is Greg Fuller from New Hampshire. Pre-diagnosis, I...
Episode 8 - Greg Fuller
November 17, 2016 10:00 - 6 minutes - 5.9 MBHe used to climb mountains, but now CTEPH patient Greg Fuller is being forced to set new goals for himself because of his rare illness. Though life has dealt him a bad hand, Greg is redefining what is possible in spite of PH. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware #CTEPH
Margaret Owens Transcript
November 14, 2016 13:00CTEPH patient Margaret Owens shares her pulmonary hypertension diagnosis story and how he life changed after she received a V/Q Scan and surgery to cure her rare form of PH. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware #CTEPH My name is Margaret Owens from Richmond Virginia. In 2011, I was on my way to work and I got in my car and I onl...
Episode 7 - Margaret Owens
November 14, 2016 10:00 - 5 minutes - 4.89 MBCTEPH patient Margaret Owens shares her pulmonary hypertension diagnosis story and how he life changed after she received a V/Q Scan and surgery to cure her rare form of PH. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware #CTEPH
Tara Suplicki Transcript
November 10, 2016 13:00Pulmonary hypertension patient Tara Suplicki was misdiagnosed with “exercise induced asthma” for twenty years. Two decades later, Tara has become a passionate support group leader and PH advocate focused on helping newly diagnosed patients and educating the public about the importance of early diagnosis. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin ...
Episode 6 - Tara Suplicki
November 10, 2016 10:00 - 5 minutes - 5.67 MBPulmonary hypertension patient Tara Suplicki was misdiagnosed with “exercise induced asthma” for twenty years. Two decades later, Tara has become a passionate support group leader and PH advocate focused on helping newly diagnosed patients and educating the public about the importance of early diagnosis. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #...
Deloris and Rick Peacy Transcript
November 07, 2016 13:00Deloris and Rick Peacy have been married for over 40 years. The Peacy’s are support group leaders from Arkansas who don’t let Deloris’ diagnosis stop them from living a life full of travel. Rick’s outlook on being a caregiver is a lesson in love for all. Deloris: I'm Delores Peacy from Arkansas. Rick: I'm Rick Peacy from Arkansas. We've been married for 43 years and we will be together forever. Deloris: In 2000, I started feeling out of breath and stuff. I thought I was out of sha...
Episode 5 - Deloris and Rick Peacy
November 07, 2016 10:00 - 9 minutes - 8.56 MBDeloris and Rick Peacy have been married for over 40 years. The Peacy’s are support group leaders from Arkansas who don’t let Delores’ diagnosis stop them from living a life full of travel. Rick’s outlook on being a caregiver is a lesson in love for all. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instragram, youtube & linkedin #phaware
Jim White, MD Transcript
November 03, 2016 12:00James White, MD, PhD from University Rochester Medical Center talks about his fifteen year career treating pulmonary hypertension, the importance of PH awareness to the medical community and his gratitude to all patients who participate in clinical research studies. My name is Jim White. I am a physician and scientists at the University of Rochester in Rochester New York. This is what I have been doing as a career for 15 years now. I take care of patients with pulmonary hypertension. It’...
Episode 4 - Jim White, MD
November 03, 2016 09:00 - 3 minutes - 3.18 MBR. James White, MD, PhD from University Rochester Medical Center talks about his 15 year career treating pulmonary hypertension, the importance of PH awareness to the medical community and his gratitude to all patients who participate in clinical research studies. Learn more about pulmonary hypertension at phaware365.global. #phaware #phawareMD Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instragram, youtube & linkedin @phaware
Danijela Pešić Transcript
October 31, 2016 12:00Danijela Pešić is the founder of PH Serbia. She was diagnosed with pulmonary hypertension as a baby over 38 years ago. Danijela is dedicated to raising PH awareness across Serbia and Europe, on behalf of people living with the disease. She works tirelessly to ensure the availability of approved treatments and encourages research for new drugs and therapies. My name is Danijela Pešić and I come from Serbia. We started last year, in 2015. We now have our association less than one year old....
Episode 3 - Danijela Pešić
October 31, 2016 09:00 - 5 minutes - 5.22 MBDanijela Pešić, founder of PH Serbia, was diagnosed with pulmonary hypertension as a baby over 38 years ago. Danijela is dedicated to raising PH awareness across Serbia and Europe, on behalf of people living with the disease. She works tirelessly to ensure the availability of approved treatments and encourages research for new drugs and therapies. Learn more about pulmonary hypertension at phaware365.global. #phaware Never miss an episode with the phaware® podcast app. Follow us on faceboo...
Kevin Lee Burger Transcript
October 27, 2016 09:05Kevin Lee Burger shares his story about being diagnosed with pulmonary hypertension, the importance of PH awareness and the reasons that led him to create an online support system to meet the needs of men diagnosed with this rare disease - The PH Men's PHight Club on facebook. This interview was recorded in June, 2016. Kevin passed away on December 15, 2016. I'm Kevin Burger, from Lockport, New York, Niagara County. I was diagnosed 2008, with IPAH, after several years of fighting it, n...
Episode 2 - Kevin Lee Burger
October 27, 2016 09:00 - 7 minutes - 7.57 MBKevin Lee Burger shares his story about being diagnosed with pulmonary hypertension, the importance of PH awareness and the reasons that led him to create an online support system to meet the needs of men diagnosed with this rare disease - The PH Men's PHight Club on facebook (www.facebook.com/groups/phmenssupport). This interview was recorded in June, 2016. Kevin passed away on December 15, 2016. Learn more about pulmonary hypertension at phaware365.global. #phaware Never miss an episod...
Andy Sagraves Transcript
October 24, 2016 09:0510-year-old pulmonary hypertension patient, Andy Sagraves shares his story. Andy discusses living a life of compromise, theoretical physics and how being diagnosed with a rare disease is a gift. I am Andrew Sagraves and I am from Nashville, Tennessee. I am 10 years old now, and I have pulmonary hypertension. I had open heart surgery when I was 5 days old. As a result of the open heart surgery I gained pulmonary hypertension and I was about to die and they just put me on the medicine th...
Episode 1 - Andrew Sagraves
October 24, 2016 09:00 - 4 minutes - 4.1 MB10-year-old pulmonary hypertension patient, Andrew Sagraves shares his story. Andy discusses living a life of compromise, theoretical physics and how being diagnosed with a rare disease is a gift. Learn more about pulmonary hypertension at phaware365.global. #phaware Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instragram, youtube & linkedin @phaware
Trailer 3 - Become #phaware
September 07, 2016 04:09 - 2 minutes - 2.34 MBA new podcast series from phaware global association devoted to raising global pulmonary hypertension and rare disease awareness with dynamic stories from patients, caregivers and medical professionals from around the world. New 3-15 minute episodes of this series of impactful, insightful and most importantly, hopeful conversations with members of the global PH community are released every Monday and Thursday. Learn more about pulmonary hypertension at phaware365.global. #phaware Never...
Trailer 2 - The #phaware Conversation
September 07, 2016 04:00 - 2 minutes - 2.35 MBA new podcast series from phaware global association devoted to raising global pulmonary hypertension and rare disease awareness with dynamic stories from patients, caregivers and medical professionals from around the world. New 3-15 minute episodes of this series of impactful, insightful and most importantly, hopeful conversations with members of the global PH community are released every Monday and Thursday. Learn more about pulmonary hypertension at phaware365.global. #phaware Neve...
Trailer 2 - The #phaware Conversation
September 07, 2016 04:00 - 2 minutes - 2.34 MBA new podcast series from phaware global association devoted to raising global pulmonary hypertension and rare disease awareness with dynamic stories from patients, caregivers and medical professionals from around the world. New 3-15 minute episodes of this series of impactful, insightful and most importantly, hopeful conversations with members of the global PH community are released every Monday and Thursday. Learn more about pulmonary hypertension at phaware365.global. #phaware Never...
Trailer 1 - Are you #phaware?
September 07, 2016 03:48 - 2 minutes - 2.35 MBA new podcast series from phaware global association devoted to raising global pulmonary hypertension and rare disease awareness with dynamic stories from patients, caregivers and medical professionals from around the world. New 3-15 minute episodes of this series of impactful, insightful and most importantly, hopeful conversations with members of the global PH community are released every Monday and Thursday. Learn more about pulmonary hypertension at phaware365.global. #phaware Neve...