Sunday, January 15, 2012

"I'm Lost"

Rare Disease Day is held the last day of February every year as a way to increase awareness of rare diseases. A rare disease is a disease in which there are less than 200,000 patients in the United States diagnosed with the disorder. While gastroparesis and chronic intestinal pseudo-obstruction are not truly rare diseases, many of the disease processes that lead to DTP are. That is why G-PACT has partnered with the organizers of Rare Disease Day, and why I'm writing about Solidarity today.

This year's theme is "Alone we are rare, together we are strong." Standing alone our voice is weak, but banding together as a group our voice is much, much stronger. The challenges we face are many, including decreased access to a direct diagnosis, lack of information for patients and scientific knowledge for health professionals, lack of appropriate quality heath care, high cost of the treatments that do exist, inequalities in available treatment, and isolation.

Lilo and Stitch (Disney, 2002)
Having spent the last several weeks with a three year old the image that came to mind when I wrote about standing alone is that of Stitch. From Lilo and Stitch if you need a little help figuring out what I mean. Need more help? I found a picture of the scene I was seeing in my mind.

Stitch is an alien who was genetically engineered by a mad alien scientist named Jumba. Stitch ends up on the planet Earth after escaping. He's the only one of his kind and on a strange planet. And, as you can imagine at one point he feels completely isolated. Having read a book in Lilo's room he mimicked the little duckling's cry for help. I can't help but think patients like us with rare diseases feel the same way at times. We feel lost. Rare Disease Day is a way to help bring patients, doctors, and researchers together so we don't feel stuck on a tropical island void of large cities to destruct. Um, I mean, so we don't feel alone.

Hand Prints Across America is a way for patients like us to see we are not alone in our struggles. Visit the link and see how you can join others to stand together and not feel quite as lost.

*About the author: Brittney Riley is G-PACT's public relations director, a patient, and a 4th year veterinary student at Iowa State University. To reach her please email her at rileyb(at)

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