A registry is a recording of patients and their characteristics. The PHAR is the first attempt by the PHA to begin to characterize and keep track of PH patients. This ambitious undertaking hopes to be able to identify best practices for the care of PH patients. As the registry matures we will be able to ask scientific questions and test hypotheses. It represents the first … [Read more...]
Everyone Says I Look Great
How You Look vs. How You Feel with Pulmonary Hypertension You can’t always judge a book by its cover. Some medical problems are obvious and others are not so obvious. One of the challenges of PAH is that for many patients their disease is not evident to the casual observer. My patients are frustrated that their friends and family often comment that they look great even when … [Read more...]
Flu Vaccine in Young Adults with Congenital Heart Disease and Pulmonary Hypertension
By Tabitha Moe and Jeremy Feldman As a young adult with congenital heart disease, it is important for you to take responsibility for your own health and well being. Over the years your parents and caregivers may have made decisions for you. As a young adult, you now are in a position to make your own decisions about your health and wellness. We are approaching flu season, … [Read more...]
3 Goals of PAH Fundraising
Why Is There So Much Fundraising for PAH? Pulmonary arterial hypertension is a rare “orphan” disease. The relatively small number of patients living with PAH means that they all need to band together to raise awareness, support each other and raise funds to further research in finding treatments and eventually a cure. What Are The Goals Of Fundraising for PAH? Pulmonary … [Read more...]
Zika Tips for Pulmonary Hypertension Patients
What is Zika? Zika is a virus spread via infected mosquitoes or from having sex with an infected individual. Most cases are being reported in South America but recently two neighborhoods in Miami, Florida have also been identified as having Zika carrying mosquitoes. Most people that are infected with Zika will not have much of an illness (perhaps some flu-like symptoms). … [Read more...]
