An introduction and thought piece: "A little less stats and a little more soul"

Well if you have stumbled onto this site your in for a treat, this blog is dedicated to the sociological experiment in which we put ourselves in the shoes of an individual with Fibrodysplasia Ossificans Progressiva, a rare bone disease that causes abnormal bone growth all over the body, yikes. But before I delve an deeper It's only formal I introduce myself. My name is Jackson Ciofu, and I am a Sophomore at Michigan State University majoring in History, Philosophy, and Sociology of Science (quite the mouthful). Instead of reiterating what my fellow researchers have already said, I will attempt to explain  our reasoning and procedures in much less scientific terms, as our differing backgrounds is one of our many strengths.
     When it comes to diseases portrayal in the media and in the minds of the general populous. There is a certain sympathy that people often express when confronted with those who are genetically unfortunate,when it comes to physical disabilities, by no fault of their own. While this type of compassion  justified by those who claim to have it. Empathy or the ability to feel what someone else is feeling is also tossed around with the deeper and truer understanding or  is often throw around as if having the same purport, when this is clearly not the case. Combined with the medicalization of many new illnesses turning them into statistics as opposed to people we launch our endeavor with the intent to bring back some of the humanity and weight, to those that suffer from these diseases. By subjugating ourselves to the same impediments as those with FOP, we hope to come one step closer to true empathy, and in the process demonstrate to ourselves, and those reading, that a disease such as FOP is much more than a list of symptoms and genetic destiny. It is a unique human experience that must be lived, to be understood.

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.

Welcome and Greetings!

Hey everyone, I'm Krisen and I'm one of the Michigan State Students that is behind this social experiment. As a means to study FOP we are going to spend 30 days living the disease, the details of this experiment will be added in a future post that will come soon I promise. I'm a 20 year old sophomore in college studying to become a Medical Examiner or Forensics Pathologist. I have a lot of experience with debilitating diseases in my family as my younger brother has Hereditary and Sensory autonomic Neuropathy type two. While FOP is a very different disease, I hope to be able to better understand how hard it can be to live with any condition that limits mobility and simple activities many take for granted. As the experiment goes along we will learn no only the symptoms, but what it's like to suffer these symptoms.

Krisen Lison
1/27/2013

Prior to the 30 Day Experiment

Hello everybody and welcome to Team Milo's blog! My name is Sean Fazio and I am currently a sophomore studying biochemistry and molecular biology at Michigan State University.  As a part of our study on fibrodysplasia ossificans progressiva we are conducting a 30 day social experiment to help us better understand the disease from the point of view of somebody infected with it. We will attempt to simulate the challenges an FOP patient endures by enacting restrictions as to how and what we do. It is our goal to accurately reflect on the daily challenges and problems on this blog as we encounter them during the our experiment.

Sean
1-26-13 (Initial Post)