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phaware global association
Приєднався 28 тра 2017
PHAWARE GLOBAL ASSOCIATION
phaware® was founded by a group of pulmonary hypertension awareness activists. Comprised of patients, caregivers, and medical professionals, phaware is dedicated to engaging the global community. Working on the forefront of technology, phaware drives our cause forward by leveraging state of the art tools and creative content.
OUR MISSION
Creating global pulmonary hypertension awareness through engagement and innovation to forge a new course to a cure.
OUR VISION
To improve the quality of life for PH patients by leveraging technology as a tool which will one day make pulmonary hypertension history.
OUR APPROACH
Given pulmonary hypertension is a rare disease often misdiagnosed, we are leveraging state-of-the-art social media hardware and software to extend knowledge of this disease beyond the traditional affinity group to create awareness and to educate.
Learn More at: www.phaware.global
phaware® was founded by a group of pulmonary hypertension awareness activists. Comprised of patients, caregivers, and medical professionals, phaware is dedicated to engaging the global community. Working on the forefront of technology, phaware drives our cause forward by leveraging state of the art tools and creative content.
OUR MISSION
Creating global pulmonary hypertension awareness through engagement and innovation to forge a new course to a cure.
OUR VISION
To improve the quality of life for PH patients by leveraging technology as a tool which will one day make pulmonary hypertension history.
OUR APPROACH
Given pulmonary hypertension is a rare disease often misdiagnosed, we are leveraging state-of-the-art social media hardware and software to extend knowledge of this disease beyond the traditional affinity group to create awareness and to educate.
Learn More at: www.phaware.global
Episode 482 - Claire Champion, MSN, APRN, CPNP
Claire Champion is a nurse practitioner at Texas Children's Hospital, specializing in pulmonary hypertension. As a nurse practitioner, she has the opportunity to see some of the patients as outpatients, which allows her to witness positive outcomes and the resilience of children. She also highlights the need for nurses to have a support system to cope with the emotional toll of the job. Claire encourages families to be open about their ongoing issues so that the healthcare team can provide the necessary support.
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 @TexasChildrens
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 @TexasChildrens
Переглядів: 22
Відео
Episode 481 - Charles Burger, MD
Переглядів 38День тому
In this episode, Dr. Charles Burger, the medical director of the Pulmonary Vascular Center at Mayo Clinic in Jacksonville, Florida, discusses the importance of patient registries, specifically the Pulmonary Hypertension Association’s PHA Registry (PHAR) for pulmonary hypertension. This registry collects clinical information and surveys from patients to understand their characteristics, treatmen...
Episode 480 - Dr. Dunbar Ivy
Переглядів 19514 днів тому
In this episode, Dr. Dunbar Ivy, a pediatric cardiologist, discusses the value of repeat heart catheterization in patients with pulmonary hypertension. He highlights a recent study that compared the findings of the first and second heart catheterizations. The study showed that while the first heart catheterization is important for diagnosis and choosing the best therapies, it is not the best pr...
Episode 479 - Claire Parker, MS, PNP, AC
Переглядів 3621 день тому
In this episode, Claire Parker, a pediatric nurse practitioner, discusses the results of a study that examined the prevalence of anxiety and depression among adolescents with pediatric pulmonary hypertension. The project aimed to incorporate mental health screening into the standard care for PH patients, similar to what is done for cystic fibrosis patients. The results showed that 52% of the pa...
Episode 478 - Tina Proulx
Переглядів 18Місяць тому
Tina Proulx was diagnosed with pulmonary hypertension at the age of 19. She experienced difficulty breathing and chest pain, leading to a diagnosis of chronic thromboembolic pulmonary hypertension (CTEPH), a condition caused by blood clots in the lungs. Tina eventually underwent transplant and celebrated eight years post-transplant, surpassing the average lifespan post-transplant. Tina emphasiz...
Episode 477 - Marilyn Hanft
Переглядів 15Місяць тому
Marilyn Hanft, a CTEPH patient, shares her experience with the condition. In 2011, she initially mistook her symptoms for asthma but later discovered she had clots in her lungs. Despite her health challenges, she remains determined to live life to the fullest. Hanft discusses her love for sailing and her current plan for writing a book about her sailing experiences. Learn more about pulmonary h...
Episode 476 - Scott Fleetwood
Переглядів 18Місяць тому
Scott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon learning about his condition and the importance of...
Episode 475 - Robert Frantz, MD
Переглядів 25Місяць тому
In this episode, Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance medical knowledge. @MayoClinic @MayoMedEd Learn mo...
Episode 474 - Amy Gietzen
Переглядів 142 місяці тому
Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension, Amy maintains a positive outlook and a determi...
Episode 473 - Alvin Rocha MSN RN CPN PHN
Переглядів 112 місяці тому
Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending the World PH Symposium to learn more ways to he...
Episode 472 - Dunbar Ivy, MD
Переглядів 142 місяці тому
In this episode, Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming World Symposium on Pulmonary Hypertension, where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to develop expert opinions on various topics, inclu...
Episode 471 - Nola Martin
Переглядів 152 місяці тому
Nola Martin shares her experience with pulmonary arterial hypertension (PAH). Nola describes the physical and mental challenges she faced, including fatigue, weight gain, and the need to ask for help. Nola emphasizes the importance of self-advocacy and fighting for one's own health. She recounts a situation where she had to push her doctor to listen to her concerns and change her medication. De...
Episode 470 - Eric Austin, MD
Переглядів 492 місяці тому
In this episode, Dr. Eric Austin, a pediatric pulmonologist and pulmonary hypertension doctor, discusses the upcoming World Symposium on Pulmonary Hypertension, which will focus on various aspects of pulmonary hypertension research and clinical care. Dr. Austin is part of the task force on genetics and genomics, which aims to explore the genetic landscape of pulmonary hypertension and identify ...
Episode 469 - Victoria McKinnon
Переглядів 163 місяці тому
Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make the difficult decision to remove care. Victoria ...
Episode 468 - Wolf Haley
Переглядів 173 місяці тому
Haley (aka @Wolf Haley), who was diagnosed with pulmonary hypertension (PH) at 18 years old, shares her journey with the disease and how she has found healing and purpose through art and advocacy. Haley discovered her passion for art as a form of therapy, using watercolor to express her thoughts and emotions about living with PH. Haley also works as a TikTok manager for a nonprofit organization...
I am excited to be a candidate for this procedure and get my life back testing starts next week and by this time next year I hope to be able to do things again
Good luck ❤
I was diagnosed with PAH 4years ago. I live on oxygen too.❤
You're right, I just realized that Mario updated his favorite way to tackle ED and it's crazy! Although what he previously talked about was pretty decent, it was difficult to follow, I just go'ogled the latest by Mario Volpstein, it's so much simpler and potent now!
I miss her so much...hearing her voice just makes my heart break. Miss you mamachelle 💔
Greetings from oakville Ontario I had cteph chronic thrombosis pulmonary hypertension disorder and had pfo at trillium hospital in Mississauga my cteph was triggered by having a stroke while driving home from work on April 4 2020 thanks for reading my message
My name is Karine I had balloon angioplasty in 2019 and it greatly improved my quality of life. In this PH awareness month I would like to thank all the doctors in TGH. You are the best team.
Thank you so much. I'm blessed to have you, Dr. Rayner, and Dr. Prutkin on my care team. I never knew having a heart catheterization could be so much fun, but you and your disco ball never disappoint. Thank you for all you do and pouring your heart and soul into helping people feel better.
Hi Doctor! So blessed to have you on my care team. Thank you for helping me stay alive! P.S. Love your disco ball😁
My name is Stephen winter and i had cteph had surgery at the Toronto General hospital under the direction of doctor laura Donahoe on aug 4 2021 dr perrot was also involved with my surgery my condition was discovered from a stroke with dvt of 4 blood clots and through pfo closure surgery at trillium hospital in Mississauga under the direction of doctor Jeffrey puley
And I thought I had met all the beautiful nurses at Sulpizio when I had my PTE done. Apparently not. Thanks for giving me a second chance at life UCSD Health. Such great teamwork!
I had my PTE surgery at UCSD in February of this year. It was a complete success, but with a few unexpected surprises. I had to be intubated for a week after surgery as I was not ready to be woken but once I was awake I progressed very well . I went home after 3 1/2 weeks in the hospital and I’m now feeling nearly normal six months after the surgery. Dr Victor Pretorius and his team at UCSD were absolutely incredible.
I'm glad you guys show these videos for the people that need support 4 pH and pah
Amazing story!
Steve Van Wormer was in the Movie Meet the Deedles His son has pulmonary hypertension he’s healthy
So hot
Sorry dear
Yes
Sorry
My dear friend, may you rest in peace in the arms of our Heavenly Father. 🙏🏾❤️🙏🏾 You will be highly missed! 😥
Rest easy childhood buddy😢
Im waiting to hear from UCSD for my initial PTE surgery consultation. My pulmonary team at Kaiser believes I am a good candidate for the procedure. Hopefully I will be able to have the surgery soon at UCSD.
Im waiting to hear from UCSD for my initial PTE surgery consultation. My pulmonologist told me that working on older clots like mine (12 years) is sometimes preferable than new clots. We shall see! 😄
Pretty close to how I am..
Table 2. HA (haemagglutination) Ta____a 3. IHA (indirect haemagglutination test) with paired sera for serodiagnosis of viral infection CALCULATION: Titre of antibodies in the 1st serum 1:20 Titre of antibodies in the 2 Nd serum 1:80 Divisibility of growth of titre 4 times
Hi guys Has anybody been in such (phase 1) clinical trials? Have you had any serious or permanent side effects???!!
Wish trials were open to Canadians. Feels hopeless for people with scleroderma here
Does a cardiologist perform this surgery or a pulmnoligist?
I was born with a heart murmur and Doctor Young was a blessing to my family, a smile on his face every appointment I had with him ❤
Dr. Fernandes is the GREATEST. I lived through PTE surgery and I know what a valuable member of the team he is. I must emphasize the word “team”, because without their seamless coordinated effort at UCSD I don’t think I would have achieved the outstanding result I did.
Wow
Great story.
I relate to this story so many ways except I'm taking more precautions because less people in my area are taking precautions and plenty of out of state people thwarting the rules. Though I belong to a few groups and pop in from time to time lots of wallowing or reminders of this person or that person who died and it becomes more about death and complaining than actual support.
My name is Sara Cates you stole my name 😠😠😠😠😠😠
Rest In Peace Abby we love you so much and we miss you
I have pulmonary hypertension because of my lupus. Now I have Hep C. I am a really scared. Thank you for sharing. This was very good to hear now! Keep Fighting and I wish you the best!!!!!
Great story and thank you for sharing. I feel the same way getting discharged from the hospital. It was great to hear someone who has this issue as well. Again thank you for sharing!!
Darlene is a fighter, she'll never give up!
Fine.
Sean, I started this because of you. Thank you for every gift you left me with. Your flame burns blue still.
Well said. I wish I had a man like that. I live without a caregiver. I hope you know you have a lucky wife. She has an understanding of the disease and so rare to find.
Rip Bonar, forever in our loving memory.
Palletive care in Temple is not clear. They say cancel patient only. I have lupus and pulmonary hypertension. Lupus Drs because of the low platelets was an oncologist and in a cancer hospital
I am a male 39 on methelphenadate (ADD) started in grade school. 5’6” 138lbs in ok health. As I started training for free diving (hypoxia?) I started getting PH symptoms and was started on asthma meds. Is this type of methamphetamine included in your study? Your thoughts?
you were an inspiration to many. You will be missed
Well explained.This Doctor saved my life.
nikad u svom zivotu nisam videla bolju osobu, ne mora da progovori sa ovim ocima, sve se vidi.. volela bih da ga upoznam jako
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Julie, just from your audio podcast I can tell you must have such a wonderful personality, sending healing thoughts to you.
Thank you for explaining the clinical trial process concerning the amount of paperwork involved and more importantly that there may be procedures done during the trial that a person may not ever get outside the trial. I am more open to perhaps being a part of a trial than I was in the past.