Friday, February 14, 2014

Gastroparesis Awareness Day

Happy GP Day!! Yes, it's Valentine's Day, but I'm not really a mushy person, I don't like pink, and the color for GP is green, so all around it seems like a better idea to celebrate Gastroparesis Awareness Day...and I happen to have GP...so let's celebrate!!

This time last year I was really sick and unable to eat much anything at all, so I'm really celebrating today. I am so grateful to have found a treatment plan that is working, and that I'm in a place where I am able to eat pretty much what I want (within reason, haha, no cheese casseroles for me!).

One thing that I've struggled with/wondered about is how I fit into these "awareness" days. This year has been the first time I've really tried to do anything for Dysautonomia Awareness Month or Invisible Illness Week or Gastroparesis Awareness Day. And when I say doing anything I mean making a post of facebook or this blog...does that even count? I want to do my part to raise awareness, but what does that look like?

Recently I just found out that there is a genetic research trial looking at MCAS and other similar conditions and the genetic background of patients with a diagnosis or suspected diagnosis. Being a part of that is way for my experiences and medical challenges to contribute to the research community and hopefully work toward finding a better way to diagnose and eventually treat these rare conditions.

Something else that has made me think about my contribution to raising awareness for these conditions has been my research that I am doing in my PhD program. One of the grad students who is a year ahead of me is starting a study on Lower Body Negative Pressure (LBNP) and blood flow changes. His purpose is looking at therapies for Parkinson's Disease and other neurodegenerative diseases that may cause some form of orthostatic intolerance. I still have about 6 months or so before I start my research, but what better way for me to contribute to the Dysautonomia community then to use my resources to do LBNP studies to simulate orthostatic stress and study the sympathetic and parasympathetic response of the body.

Maybe I'm not ready to be all out there with everything that is going on to my entire facebook network, but I do want to be a part of raising awareness and contributing what I can to the research community. Whether it's participating in a research study or doing the research myself, I want to do what I can to increase the awareness of these rare conditions so others are able to have quicker diagnoses and better treatments.

So wear GREEN for Gastroparesis Awareness Day!!!

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