Although I am starting to get used to the feeling of wearing wrist braces almost all the time it is still very unpleasant and difficult to work with. Writing notes in class is difficult and because of that sometimes I have taken off the wrist braces so I do not get too far behind. Similarly in lab, I cannot wear the braces because it is a safety hazard to work with them on because I lose the ability to safely hold and transfer lab ware. So many things we take for granted such as tying our shoes, putting on our clothes and writing become way more difficult when the mobility of our wrists are restricted!

~Sean

First Post in Stage One

Hello everybody! After wearing these braces for the past couple days I now have realized how inconvenient they really are. Things I take for granted like writing, typing and tying my shoes are now an ordeal. It's difficult to pick things up and maneuver them the way I want to. I know this is just the beginning of the disease, so I know things are only going to get worse.

Sean

Week Three (CON)

The week of reduced knee function wears on as annoying and frustrating as ever. I've spent all week trying to get up stairs and failing as well as walking across campus with a lovely limp. The brace completely stops my knee from bending, which you don't realize how much you rely on your knees until they're gone. Another frustration I face is people staring at me. I get a lot of looks in the direction of the brace and I want to tell people I'm not actually hurt but when I do that makes the accusatory glances even worse.

When they think you're injured they take pity on you that I feel I don't deserve that. So I explain the experiment to them, letting them know it's not really an injury. Some are interested, but most get upset in a minimal way. Overall this experiment is very stressful and upsetting in a way, and also very enlightening. It's shown me how people react to injury and how curious everyone can be when they see someone who is injured.

~Krisen

Week Three, day three

So this week is the start of phase three for me. Which means I have begun wearing a massive knee brace containing three metal bars designed to completely stop my knee from bending. And trust me, it definitely works. As of right now I have to talk all stairs one at at a time, which means I take three times as long to get up a flight of stairs as all of my friends. And to boot I have to prop my leg up in class because it sticks straight out. Sitting in a lecture hall with tight seating is not easy if your leg doesn't bend let me tell you.

This week has caused a lot of stress and frustration because I often have to go out of my way to find a way around stairs. Some places it's taken me five to ten minutes just to find the elevator, not counting the time it takes for it to get to me. Walking across campus wasn't much harder than it normally is, but I had to almost drag my foot across the ground because I can't bend it up like you normally would to walk. I'm glad I'm only in one brace this time around though because it gives me at least some semblance or normality.

~Krisen

Half Way Done!

I can't tell you how happy I am to be able to say there are only three days left of me in this brace. The frustration and anger just builds every day that I wear it. I tried to make perler bead crafts tonight, and it worked out pretty well, but I was struggling the entire time to lay the beads right. Add to that the frustration of setting up a fish tank in braces, and getting all of my clothing hung up as well. To be honest I just want to take them off and not put them back on, but I have to keep going for the sake of research.

Using the mouse for my computer is very difficult without the use of my wrist. I struggle to text and have to hit one letter at a time instead of fully using both my thumbs. It's extremely hard and very frustrating beyond belief. Like I said, I'm looking forward to taking them off and passing them down to the next member of our group.

~Krisen

30 days, week 2 (Con)

Hello again guys, as you know I've been in wrist braces all week. I've just been getting more and more frustrated with them as time goes on. My family has 8 puppies that are six weeks old and picking them up without the use of my wrists is extremely difficult. Opening my pills takes way to long, and doing my laundry is also a hassle.

I'm not going to lie to you guys, I actually took them off before writing this because I couldn't stand the idea of trying to type of my laptop again with those braces on. My wrists feel free and I love the feeling. I couldn't image having to deal with that on a daily basis, without the option to just stop. I'm going to make this brief because it's late and I need to sleep but overall I feel frustrated and just in awe of even just this one thing that these people have to go through. It's a lot harder than I ever considered it would be.

~Krisen

30 days of FOP, Week 2

I will be the first of the four researchers to work through the full experiment that is being conducted and recorded here. Each person in our group is ushered into a step after the person before them finishes it. So once my week two is finished, the next researcher will be beginning week two. Our experiment includes four weeks of varying degrees of restricted movement in order for us to fully understand what it's like to live with FOP. Our week 1 was used for controls to see how different it is completely simple tasks with and without FOP. Week 2 introduces two wrist braces, one on each arm, to restrict the basic movements of our hands that we take for granted.

I am currently wearing the braces and will be continuously wearing them until Wednesday of next week in order to maintain the illusion of having lost the use of my wrist. It's taking a lot of effort to just type on my keyboard to write this blog entry this morning. I guess I never really realized how much our wrists move while typing, so having that taken away is a whole new mess for me. I have to keep my hand elevated above the keyboard rather than wresting my wrists on it like I normally do. If I rest my wrists I can't bend them enough to reach all of the keys I need.


 I have a couple of pills that I take daily and with the braces it took me almost 5 minutes to find a way to open the bottle that I can normally open in less than 30 seconds. By the time I got it open I was extremely frustrated and didn't even bother to close it up again. Without my wrists I had to roughly jab the top against my palm, but couldn't really twist it right so it was a struggle. My frustrations only got worse when I attempted to go through and fold all of my clean laundry. It wasn't too hard but still took longer than normal to finish.

At the end of the day I just feel frustrated and tired of dealing with the braces already.

~Krisen

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)