FOP is a rare hereditary disease that causes damaged connective tissues to ossify, or become bone. In order to better understand this disease the four of us; Krisen, Jackson, Sean, and Angela; have begun a 30 day journey to experience the disease first hand.
Wednesday, January 30, 2013
my preamble: an exploration of a lifestyle with FOP
First and foremost, thank you for taking the time to explore our sociological experiment to further understand the physical lifestyle brought on by a rare genetic disease. With that being said, my name is Angela Porta and I am a Sophomore at Michigan State University majoring in Chemistry and Environmental Science. As my fellow researchers and I aim to detect a rare genetic disease, called Fibrodysplasia Ossificans Progressiva (FOP), in DNA through a PCR based diagnostic assay, we also find it pertinent to delve into the actual living conditions of an individual with this rare mutation. This disease causes severe extra bone growth to affected individuals at an extremely rapid pace, which results in serious debilitation. In an attempt to emulate the life of an FOP patient, we will do our best to increasingly add various articles to our own bodies to simulate FOP symptoms and restrict our movement. We will be recording the time it takes us to perform daily tasks to produce a quantitative analysis of these restrictions. Aside from the numerical data we plan to collect that will portray the immobilizing nature of the disease, I also anticipate to experience much frustration and sadness. Just thinking about living in those conditions leads me to be sympathetic, but through experiencing some of these struggles firsthand I will be able to empathize with patients of FOP on some level. Although the experience will not amount to the true struggles an affected individual has to battle daily for the entirety of their life, I hope the experience enables me to better understand this rare mutation caused by one single nucleotide base change in DNA.
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