Friday, January 13, 2012

Karen's First Conference

Posted by:
Karen Madison
PH patient, Lexington, S.C.

My name is Karen, and I am super excited about attending my first Conference. I was diagnosed in Oct. 2007 and was misdiagnosed for four years. I was at a total loss when they told me that PH is a rare incurable disease and didn't know what to ask or what to do. Several weeks after they diagnosed me they told me I also had lung cancer, which proved to be false.

I finally got on the computer and started looking up the programs our local hospitals offer in hopes of finding something to attend where I could learn more about this and not be alone in it. I found that Lexington Hospital did have a PH support group that met every other month. So I called the number listed, and my husband and I went to our first meeting. Doug Taylor is a wonderful leader, and the folks that come and speak to us are very informative. We have learned a lot and no longer feel like we're on our own.

I'm looking forward to learning more at the Conference and helping out with the research. I know there is still a lot to learn and things are changing all the time.

Thank you PHA for all the information that you send out to us.

Tuesday, January 10, 2012

And We’re Off… Conference Registration is Open!

Posted by:
Diane Greenhalgh
Conference blogger
a.k.a. PHA Director of Web Services

As the largest gathering of PH patients, caregivers, family and medical professionals, PHA’s biennial International PH Conference and Scientific Sessions is always the highlight of the PH community calendar. It is a kind of reunion where we all get together to catch up on the latest research and education, to network with others in the PH community, and to see PHriends or colleagues we only get to see in person every two years at this Conference. The Conference also attracts a good number of new PHers who may never have met another PH patient or caregiver before. For the first time, they know that they are not alone, that there is hope.

This year’s Conference will be taking place June 22-24 at the beautiful Renaissance Orlando at SeaWorld® in Orlando, Fla., the state where our community began with a meeting of four women around a kitchen table. That very kitchen table used by our founders will be at Conference, leading us to this year’s Conference theme… The Power of One: From a Kitchen Table to Around the World.

And from around the world they will come, as our Conference is truly an international meeting. Leading PH medical professionals from across the globe will be meeting about the latest in the PH field at our Scientific Sessions, June 21-22. For PH association leaders from other nations there will be a pre-Conference International Leaders’ Summit, June 21.  And we have three jam-packed days of education, networking, advocacy and research for everyone June 22-24!

I’m very excited about attending this year’s Conference! I’ve been to three so far and they keep getting better and better. My favorite part is the “Journeys” luncheon where three or so pairs of doctors and patients share the story of their PH journey together. The experience always evokes a mixture of tears and laughter.

So as far as I’m concerned the countdown clock on the Conference homepage can’t tick down fast enough. Our president Rino Aldrighetti loves those types of gadgets too, but the seconds ticking away make him a little nervous with all the things to be done. While there is a lot to do between now and then, it will all come together to be a life-changing weekend when we will learn a lot and have a great time doing it because of the PHriends we get to share it with.

I hope to see you for our 10th reunion at our 10th International PH Conference and Scientific Sessions. Registration is now open, so get started planning your trip today!