May 5 is #WORLDPHDAY .
To spread awareness, we were asked to post information, email or message news outlets our stories.
In Addition, we were asked that ::
Public service announcements (PSAs) focused on Pediatric PH Research,
Early Diagnosis, and the work of the PHA are being sent out to
approximately 10,000 national radio and 4,000 television networks across
the country on Friday 4/25 at 9am ET!
The spots are titled: “Pediatric PH Research,”
“Sometimes It’s PH,”
and “What Is PH?”
need your help to get these PSA's from station managers’ fingertips and
on the air! Contact your local news stations and ask that they
broadcast these PSA spots.
My Doctor Mathier
My story, is RARE!! I was born with
Multiple Congenital Anomalies, I have PAH, because of the heart and lung
defects. I also have Hemi-vertbrae Scoliosis. I officially have had PAH since my Heart Catheterization when i was
10, in 1967. At that time my pressures were 90, normal is 25. In 2010, when they
finally put me on Meds, the pressure was 160, dr said, that was one of
the highest levels he has seen. My Meds come to my via a speciality
pharmacy, UPS brings them monthly. Thankful to my #UPMC Medicaid, they cover the $100 a pill, $6,000 a month bill.
of the heart, lung defects, and PAH, i never had energy, always getting
out of breath, last to be choosen in games. The Meds help some. They are talking about adding a
secondary drug, which runs about the same $$.
I have refused the lung transplant, don't feel that is for me. I spent a year flat on my back when I was 12, undergoing the Scoliosis -Halo-Femoral Traction.
I keep busy, make quilts, do Advocacy for Heart Defects and #PAH.