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

PAH patient and Chicago-area support group leader, Sue Liss, discusses her pulmonary arterial hypertension diagnosis. Sue is involved with multiple PH related advocacy groups. Through these groups, she offers support and guidance, particularly in navigating medication funding challenges and accessing the right care, emphasizing the importance of community and shared experiences in managing this 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: [email protected]

In this episode, Dr. Scott Olitsky, the Global Center of Excellence Outreach Director for Cure HHT, discusses hereditary hemorrhagic telangiectasia (HHT), a genetic disease characterized by abnormal blood vessel development. HHT can cause bleeding in various parts of the body, with nosebleeds being the most common symptom. In some cases, HHT can lead to the development of pulmonary arterial hypertension (PAH). Medications that dilate blood vessels can worsen bleeding in HHT patients. Dr. Olitsky shares his personal connection to HHT and PAH and highlights the efforts of Cure HHT to improve diagnosis and treatment options for 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: [email protected] @curehht

Eric Borstein, who lives with pulmonary arterial hypertension, is walking from Los Angeles to San Diego to raise funds and awareness for the benefit of Team PHenomenal Hope.  On September 21st, 2020, while at home, he collapsed from massive right heart failure and almost died.  On September 22nd, 2024, four years after his PH diagnosis, he begin his 120+ mile walk for patients living with pulmonary hypertension.  Learn more about his journey and this amazing event at WhereIsEB.og.

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: [email protected]

In this episode, Thekla McGinley, a PAH patient and advocate, shares her journey with pulmonary arterial hypertension (PAH) and the changes she has witnessed in the treatment options and education for medical professionals. She emphasizes the importance of raising awareness and ensuring that patients have access to proper treatment. Thekla also discusses her role as a support group leader and encourages patients to communicate with their doctors to advocate for themselves in order to receive the best care.

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: [email protected]

Dr. Morris Salem is a pediatric congenital cardiologist and adult congenital heart disease specialist at Kaiser Permanente in Southern California. He takes care of patients of all ages, from fetuses to elderly individuals. Dr. Salem's primary focus is interventional cardiac catheterization, specifically the closure of holes in the heart. He also deals with pulmonary hypertension and collaborates with referring physicians throughout Southern California. Dr. Salem works within the Kaiser system, which provides care to all patients regardless of age, race, or financial abilities.

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: [email protected]

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: [email protected] #phawareMD #PPHNet @PPHNet @TexasChildrens

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, treatment options, and outcomes. The PHAR registry also provides opportunities for research on topics like social determinants of health and newly diagnosed patients.

@CharlesBurgerMD @MayoClinic @PHAssociation

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: [email protected] #phawareMD 

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 predictor of long-term outcomes. Dr. Ivy emphasizes that the decision to perform a second heart catheterization should be individualized and discussed with the patient's pulmonary hypertension physician. He also mentions that cardiac MRI is becoming more valuable in assessing right heart function and can be used as an alternative to heart catheterization in certain cases.

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: [email protected] #phawareMD #PPHNet @PPHNet 

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 patients had symptoms of anxiety and/or depression. The study also found that females were slightly more likely to have symptoms than males. The researchers hope to incorporate mental health screening into future care guidelines for pulmonary 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: [email protected] #phawareMD #PPHNet @PPHNet

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 emphasizes the importance of advocating for oneself in the healthcare system and encourages others to trust their instincts and fight for their needs.

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: [email protected] @PHACANADA