Some of you probably know me ingame as i have been playing EVE since late 2004 (or early 2004 with some trial accounts). But that’s not the point here.
This post is made because i was diagonsed with a rare disease called ‘Pyoderma gangrenosum’ on tuesday (13.02.2018) that only 1 in 1 million peoples worldwide get or around 5000-6000 peoples in the world gets / have every year (according to the known recorded history of this). And that alone is craaaaazy and freaks me out that i’m 1 of 5000-6000 every year that can get this / has it. 5000-6000 every year out of 7 billion peoples is very rare.
There is only 7 peoples with me in Norway with this disease according to a list / map i’m looking at. But i think there is more than that though. And Norway passed 5 million in population not so long time ago.
I have been dealing with this quite alot since August - September 2017 as i managed to get a little wound on my foot while working. Well, a wound i say. Everyone would probably think ‘hey, it’s just a normal wound that will heal itself within a week or so’, so it’s nothing to worry about. I was thinking that and i was going with this wound on my foot all the time while i was working 206.5 hours that month. Yes, my work contains alot of walking and that, so i did put my foot under alot of stress.
Just a week after i first saw the little wound on my foot (in August - September), the wound basicly started to go nuts and it exploded into a mess where the little wound would open itself really fast and eat the wound more open instead of healing it, like the imune defense normally would do. Even here i was thinking it’s something that’s gonna be healed by my body within a week or so.
The problem was that it wasn’t doing that AT ALL where i didn’t act fast enough to get to my doctor. So before i actually acted to get to my doctor for this, the little wound had expanded into 10 wounds (3 big ones and 7 smaller ones) on my foot within a week. Here my doctor did all she could do to try and get controll over it for about 2-3 weeks. But she didn’t manage to gain control over it where the wounds even expanded into 19 wounds in total on my foot in the meantime before she took the next step of sending me to the hospital (the amount of wounds my imune defense heals and creates is like a rollercoaster). And from here i have been in and out of the hospital for the last 3 months in total where the doctors there haven’t figured out what this is, until tuesday (13.02.2018) when i had an appointment there where they figured out the cause of my problem.
The strange thing here is that the wounds can start to heal itself just randomly and get relatively good after 2 weeks when it starts to heal like it has done 3 times by now. And then 2 days later after it looks pretty good it would turn fully around and explodes again into a mess where it rather creates more wounds and makes the current wounds much larger, like it does now. And i have alot of smaller not open wounds on both of my legs aswell that is kinda brownish in color that never goes away.
And after a bit of research on the internet, the symptoms to get the ‘Pyoderma gangrenosum’ disease is pretty much indentical to what i have experienced here. So there is no doubt that it’s that disease i have.
Here is some info about the disease: https://www.mayoclinic.org/diseases-conditions/pyoderma-gangrenosum/symptoms-causes/syc-20350386
Here you can see what that disease can do to your body…
Be aware that some of the wounds shown in those 2 videos might be a bit uncomfortable for someone to watch. So if you are affected by watching some wounds, then i’ll recommend you to not watch those videos.
So on tuesday (13.02.2018) after i came home from the hospital, i started with a new medicine that is supposed to help with this. It’s called ‘Prednisolon’. So if the wounds on my foot haven’t shown any improvements within friday this week (16.02.2018) then i will be hospitalized.
As it’s a very rare and serious disease that i have got, it makes it both special and scary at the same time. Because if this thing gets out of control, i will be in a big pile of mess .
So my question here is, does anyone else here have experienced the same?
Yes, as it’s a very rare disease, the chance of someone here having the same is a blit slim i think. But i’m just trying to find out if someone here have had it or if someone have had anyone within the family with the same on what they have done and if they still are struggeling with that today.
So if you have anything to share about this disease, then please have a discussion here about it.