The Pulmonary Hypertension Association (PHA) is the major lobbying group and research support organization in the US. It's kind of an interesting organization, because they sponsor research symposia for clinicians and researchers, and invite the patients. I've attended three of their gatherings, and the amount of information to be gleaned (most of which just flies right over my head) is amazing.
The other thing they provide is a place for patients (and caregivers and occasionally clinical professionals) to gather and "meet" each other online. This group is terribly important to those newly diagnosed who are scared at the prognosis and the odd treatments (the chance of having a pump permanently affixed to you isn't an everyday occurrance).
In a chat room one night, we discussed how nice it would be to be able to see one another, instead of just typing at one another. I volunteered to build a portrait page for us, and there will be a link to it in the bottom of this post.
Look at these faces. We don't look sick. Yet in the two weeks since I built the page, one of us has already died.
In the slideshow mode on this page, the faces and names just keep coming.
Most of us have never met in real life, never pressed the flesh. And yet, we are community. We have dark humor, bitch and moan about our husbands, and reinforce our mutual denial that anything is wrong with us.
When one of us dies, it cracks that denial just a little bit.
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