The days where I am downright angry about having pulmonary hypertension (PH) are far and few between. But I am human and I do have those days. Guess today is one of them days. This article in Psychology Today explains why I get a little jealous over awareness of certain diseases and disorders. So many have come together to raise awareness and funding. With funding, solid treatment options have emerged and for some diseases, a cure has been found. There’s not enough of us to bring PH to the forefront. Research is slow and a cure is no where in sight. Don’t get me wrong, the Pulmonary Hypertension Association (PHA) has done some great stuff. If you have PH, you know all about the PHA. If you don’t have PH or know someone personally who has PH, you most likely know crap about the disease let alone ever even heard of PH. I read somewhere in the gazillion journals, articles, blogs, websites, pamphlets I’ve researched that people die 3 years after diagnosis without treatment and those with treatment often die 5 years after diagnosis. 8 years into our PHight and very few advancements have been made. I’ve done my very best to share our story to raise awareness but I know it’s not enough for it to make a difference in my lifetime. I can only pray it is enough to make a difference in the next mother, daughter, sister or friend diagnosed with PH (yes, men get it too, but it is more likely to happen to women). 1-2 in a million are diagnosed with primary PH (my culprit disease) so there’s just not enough of us but I think we still matter and are worth the funding and research. Or at least with those kind of odds, let me also win the lottery (then I’ll fund the crap out of some kickass research). Yep, I’m jealous just a little bit of all the pink, yellow, red and other brightly colored ribbons . . . PH is stuck with the color periwinkle. What the hell color is that? And that color is also used by other diseases and disorders. I’m really embarrassed to admit this, but I am a little bit jealous of all the other colors . . .
we’ll just keep on PHighting anyways.
Want to help raise awareness? Tell 5 people about PH today. Then ask them each to tell 5 of their friends about PH. Then tell them to tell their 5 friends to each tell 5 people about PH, so on and so on. Just because not everyone gets PH doesn’t mean you shouldn’t know what PH is. Spread the word. Make a difference.