Pathlight Summer 2016 - (Page 50)

QUESTION OF THE QUARTER PHA ASKED THE PH FACEBOOK COMMUNITY THIS QUESTION. HERE'S SOME OF WHAT YOU HAD TO SAY. When did you realize you were a PH advocate? Cheryl Lauer I've had PH for 10 years or so. I'm 67. I think the first time a child noticed my oxygen cannula as he was passing by, I decided to educate anyone I could about PH. No, I don't go up to anyone like an annoying salesman, but if people (especially kids) seem afraid or curious, I'll talk to them. I just tell them I have a problem with my heart and the oxygen helps it beat easier because my lungs don't work right either. Like Reply Terri Majors My daughter is an advocate for me, and she is great at it. I'm starting to learn. I have had PH for three years, and I am just now starting to concentrate on myself, which I will do from now on. Like Reply Jeri Maunu Nudell When I realized I was going to be the only one who could change the course of my illness, I buckled down and became a sponge and the patient who questions everything. When you are the only person your healthcare providers treat with PH, you get up and lead the charge. Like Reply Jan Elise Fedele Pensavalle When my precious Goddaughter was diagnosed at 10, I realized I was an advocate. She is a powerful warrior (now 33!) and an inspiration to all of us (ill or not) to make the best of life every moment! Like Reply Dale Rea Our son Jason was diagnosed eight years ago. We started to learn by going to a group in Bullhead City, Ariz. Jason learned as much as possible about his treatments. He continued until he lost his battle in February 2016. Without PHA, this journey would have been so much harder. All his PH friends have been great. Someday there will be a cure for PH! Like Reply JOIN THE CONVERSATION AND CONNECT WITH US ONLINE! and @PHAssociation on Twitter and Instagram 50 PATHLIGHT // SUMMER 2016 #Heart2CurePH

Table of Contents for the Digital Edition of Pathlight Summer 2016

Message from the Chair
Message from the SLC Chair
Quick Takes
PHenomenal Lives
Family PHocus
A Day in the Life of a PH Physician
Research Corner
GO PHAR Research
Ask the Expert: Post-PE Monitoring
End-of-Life Conversations: Tough Questions & Important Answers
Lantos Highlight
Conference & Leadership Changes
Chapter News
Advocacy PHact or PHiction? Test Your Knowledge of PH Advocacy
Calendar of Events
Question of the Quarter:

Pathlight Summer 2016