Thursday, January 17, 2013

PH + [Your Condition Here] + People Who Understand

PH and Lupus
This week I had the chance to see a great set of four new PHA videos in which patients and doctors talk about their experience with PH and Scleroderma, PH and HIV, PH and Congenital Heart Disaease and PH and Lupus.  The videos are connected to PH Plus, a community of patients within PHA who live with PH and another related illness. Thanks so much to all who were willing to tell their stories and share their experiences and knowledge, and to Kim Lamon-Loperfido, PHA's Manager of Patient Outreach and Services for her work on this project and for writing this guest blog ... oh, and after you watch the videos, please help PHA maintain the quality of the resources we provide for you by taking the short survey on these videos.  Thank you!

PH and Scleroderma
As I started my tenure at PHA in August, I was tasked with seeing a new video series from post-production work to “live” on the PHA website. As a new staff member, I have learned so much about PH and associated conditions through watching these videos and I hope that you do too! In this video series, you will hear stories from PH patients living with associated diseases (lupus, CHD, HIV and scleroderma) and the healthcare professionals who treat them. 

Some of the key facts I learned through the video series included:

·       About 5 in 1,000 Lupus patients develop PAH. It is critically important to do further testing to determine if it is PAH causing the shortness of breath. Lupus can affect the heart, heart valves, lung and muscles that surround the lung and chest wall. 

·       1 out of every 200 HIV patients develops at least mild PH.

·       PAH is a common complication of scleroderma. Between 8 to 12 percent of all scleroderma patients develop PAH.

But beyond the medical facts, the videos feature the provocative personal stories of patients and medical professionals in a very accessible way. Here are some highlights:

PH and HIV
·       “The most challenging part of living with multiple illnesses is managing your care.” — Anna Bower

·       “Scleroderma and PH is not my identity ... If your sickness becomes your identity, then you don’t have a shot. You have to surround yourself with people that do not make you feel sick.” - Tammy Gilbert

PH and Congenital  Heart Disease
·       I think that the following quote by Richard Krasuski, MD, emphasizes the importance of this video series: “To be able to recognize [PH in association with another condition] requires an astute doctor and an astute patient.”

If patients experiencing and doctors treating scleroderma, CHD, HIV or lupus know that there may be an increased risk for PH, there may be a reduced time to diagnosis.  And, as we know from the Sometimes It’s PH campaign, when patients with PH are diagnosed early, they have improved chances for a better life.