Our Diagnosis
In the introduction post we explained that between the two of us we have Satoyoshi, Ehlers Danlos, and Polysplenia. Now what you might be thinking is WHAT DOES THAT MEAN? Well, I must say, thats what most people think, honestly, that what we think as well.
Here is an explanation ...
Satoyoshi Syndrome is a rare autoimmune disease that effects 50 known people worldwide. FUN FACT: It is so rare that my neurologist diagnosed me from the Wikipedia page. My symptoms are alopecia which means that I have lost most of the hair on my head. Muscle spasms that effect the left side of my body. They call it myoclonic twitches or something like that but we call it jeebies. I also experience amenorrhea which for some reason the male doctors thought was the only thing that needed to be fixed. FUN FACT: Guys can also have Satoyoshi if they have muscle spasms, alopecia and skeletal abnormalities.
Ehlers Danlos is a genetic disorder that effects collagen throughout the entire body. This means that I can bend like a pretzel. The most common response to that is "cool, no way, show me, I wish I could do that." What I have to say for myself and for many others with Ehlers Danlos is "no you don't" The flip side to being able to bend like a pretzel is that my shoulder can dislocate from opening the refrigerator, and I can't open the microwave without fear of thumb dislocation. I have also had problems with my GI tract meaning that I no longer eat dairy or gluten.. you know unless I REALLY want to. It also means that one day soon I could be in a wheelchair, but that to come later so for now I am fine in a state of constant denial.
Polysplenia Syndrome is a rare genetic disorder, that honestly I have no idea what it means. It causes so many problems but here is what it has done to me. For starters I have half a heart on the right side of my chest. FUN FACT: It works like a fish and we call it Nemo because come on who doesn't want to be just like finding Nemo, he is the best. I may have more than one spleen but they have never gotten in the way so nobody really cares. My eyes don't work together which means I can't go cross eyed, trust me my mom turned trying to make me go cross eyed in to a game, she loves it.
Despite all of this we are both stuck in our dorm on a Saturday because we are procrastinating doing essays, readings, and studying for exams just like any other student.
Here is an explanation ...
Satoyoshi Syndrome is a rare autoimmune disease that effects 50 known people worldwide. FUN FACT: It is so rare that my neurologist diagnosed me from the Wikipedia page. My symptoms are alopecia which means that I have lost most of the hair on my head. Muscle spasms that effect the left side of my body. They call it myoclonic twitches or something like that but we call it jeebies. I also experience amenorrhea which for some reason the male doctors thought was the only thing that needed to be fixed. FUN FACT: Guys can also have Satoyoshi if they have muscle spasms, alopecia and skeletal abnormalities.
Ehlers Danlos is a genetic disorder that effects collagen throughout the entire body. This means that I can bend like a pretzel. The most common response to that is "cool, no way, show me, I wish I could do that." What I have to say for myself and for many others with Ehlers Danlos is "no you don't" The flip side to being able to bend like a pretzel is that my shoulder can dislocate from opening the refrigerator, and I can't open the microwave without fear of thumb dislocation. I have also had problems with my GI tract meaning that I no longer eat dairy or gluten.. you know unless I REALLY want to. It also means that one day soon I could be in a wheelchair, but that to come later so for now I am fine in a state of constant denial.
Polysplenia Syndrome is a rare genetic disorder, that honestly I have no idea what it means. It causes so many problems but here is what it has done to me. For starters I have half a heart on the right side of my chest. FUN FACT: It works like a fish and we call it Nemo because come on who doesn't want to be just like finding Nemo, he is the best. I may have more than one spleen but they have never gotten in the way so nobody really cares. My eyes don't work together which means I can't go cross eyed, trust me my mom turned trying to make me go cross eyed in to a game, she loves it.
Despite all of this we are both stuck in our dorm on a Saturday because we are procrastinating doing essays, readings, and studying for exams just like any other student.
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