How would I describe the International PH Conference? It’s like going to a family reunion, only it’s with the relatives that you like. It’s the strangest yet best feeling ever. You get to meet all of your friends that “live in the computer”. You also forget that people normally look at you as disabled because when you look around, you see that everyone is the same as you. It’s overwhelming in a great way.
I get very inspired by the patient led sessions; it’s so nice to hear other people’s stories that are so similar to mine. It starts to make me feel less alone and I enjoy sharing my story as well. It shows me that PH may be a rare disease, but that we are not only a community but a family. It reminds me of why I fight every day. It re-energizes me to go out and start trying to spread awareness for PH and fundraise. It also reminds me that I need to accept my bad days and continue to be positive.
The doctor led sessions are amazing. My favorites are the ones on the upcoming treatments. I love to hear what other options may be available soon. I was diagnosed 14 years ago, and there was only Flolan. It excites me to watch more and more treatments get approved over the years. It’s just the best feeling. I was given six months at diagnosis, and then two-five years after that. I know it’s a story we all hear, but seeing these new medications makes me feel like this disease is going to be cured in my lifetime.
This will be my fourth conference, and I get more involved each time. I volunteer, I speak, I help lead a support group and I always love to model. I remember hearing in 2008 about Gleevec, and a few months ago I got the opportunity to actually go speak to the scientists, doctors and researchers of the company!
This year I am especially looking forward to meeting up with Generation Hope friends. It is going to be great to speak with other people in my age group that have similar challenges as a young adult. I am happy to say that I am a panelist on the “Making PH Sexy” session, which is all about managing relationships while having PH. I think it’s going to be a great panel with lots of interesting points of view. Hopefully the patients in the room will really get involved and have fun with this topic.
I also love the fashion show. Silly as it may seem, it’s always fun to model in the show and watch how everyone else either hides or accessories their pump or oxygen. It just has so much energy. I especially love to see the children model. It is great that they are able to do this and not be afraid. Here is a teaser - this year I will be wearing my PH awareness outfit and a very special outfit, but you’ll have to be there to see it! Okay if you are not, I will post pictures afterwards.
As I write this I feel like I could get up and start packing. In my eyes conference can’t come soon enough! It gives me a high being around so many other patients. It’s great to get ideas from them about their support groups and many other things. The only down side is that conference only comes every OTHER year. I would love to have a conference every year. It truly makes me sad when conference comes to an end.
Hopefully I will get to meet all of you next month!!!