Have you heard of Ehlers-Danlos syndrome? Seems like patients with EDS can name themselves “EDSer”. The details of the term is explained here.
I wanna talk about my life with EDS in Japan, and how little it’s known here.
We Have No Information About EDS
Here in Japan, I feel like EDS wouldn’t be known compared to Europe or US, because you can find quite less Japanese EDSers who talk about the illness out on the internet. The one of them is me, even I have seen 2-3 Japanese EDSers on the internet. That means, there are less EDSers in Japan to begin with. Why less? We have no information about EDS. Even most doctors don’t know about that well.
Like UK has NHS, we have a similar department called MHLW (jp : 厚生労働省) in our government. EDS is counted as an intractable diseases but they don’t update the information yet. We still use information about EDS which was published in 2010 or so.
I HOPE it’s gonna be updated as soon as possible. Seriously.
My Story So Far
I’m suspected hypermobile EDS. The reason why I’m SUSPECTED is that I didn’t get a genetic test. I guess if you are also an EDSer you can realise that I had to get a genetic test if I wanna know whether EDS (type III) or not with the old diagnosis criteria. But, I wanted to know whether I’m hEDS or not. With the newest diagnosis criteria.
First Time I’ve Heard Of
First of all, how did I suspect that I’m an EDSer? It was just a post in my blog. That’s how it all started. I have written about my flexible thumbs and my writing issues because of that. This is the post though it’s written in Japanese only, please use a translator if you wanna read it.
Well, even if you aren’t understand Japanese at all you would notice my thumb something’s wrong.
A stranger who read the post gave me a message, told me that please google Ehlers-Danlos syndrome. I’ve got to say a massive thanks to the person.
That’s why I started to learn EDS.
No Information, Complex Diagnosis
I learned that EDS has 7 types. And I also learned it’s an old categorisation, EDS has 13 types now. Already I’m going to be confused. Before that, there are almost nothing which is explained about EDS with the newest diagnosis criteria written in Japanese, so I learned it on English EDS sites like the Ehlers-Danlos society.
Here in Japan, the 7 types categolised diagnosis criteria is still standard. I mean, most doctors in Japan try to diagnose me with the old diagnosis criteria. I supposed I would fulfill the diagnosis of the newer hypermobile EDS, decided to consult a doctor in 2020 but my doctors didn’t try to use the newest diagnosis in real, eventually I was told that they can’t say clearly I’m EDS (type III) or not at the moment. They couldn’t find out a reason for denying EDS but they didn’t get a surely sign for confirmation of EDS as well.
I exactly fulfill Beighton score with 6 points at least. (You can see my try here)
My doctors confirmed :
- Mild skin hyperextensibility
- Unexplained striae distensae or rubae at the back
- Bilateral piezogenic papules of the heel
- Dental crowding and high or narrow palate
- Arachnodactyly (Walker sign and Steingerg sign)
- Recurrent joint dislocations or frank joint instability, in the absence of trauma
Nevertheless, it seems like I’m not hEDS. That’s life.
Fortunately, My joints haven’t dislocate so far since my both shoulders dislocated once when I was a kid, but I constantly have many twisted joints. Each joints twisted easily anyway. For example, when I pressed the light switch, push or pull out the drawer, even just walking and so on.
I decided to give up a lot of things I loved. I was a repairing engineer for laptops for 10 years, loved to do something by using hand tools, but I can’t anymore. I twisted most of my fingers because of using hand tools. I tightened/loosed the screws the laptops on my work, and screwed me up in the end. (I’m tired)
I loved to fold origami, to make a papercraft and cardboard DIY, to play video games, most of what I loved needed to use hands.
My Life With EDS in Japan
Still depressed to be honest. I’m under stress because I can’t do what I want.
Ah yes! I got a new job 2-3 years ago because I left the previous job since I was injured a lot. Honestly, I’m not interested in my current job at all though it can’t be helped. I have to work for living my life.
I was suspected hEDS about 1 years after I started to work for my current workplace, just at that time I got increasing injury again, so I explained it my boss back then, he understood what I said and he moved me to a different department. It was pretty lucky. I thought I could have to leave from my job again.
My colleagues are so kind. I know about that well but I don’t talk about EDS to all of my colleagues because the explanation would be quite complex. Also, it’s not an important thing for most of them. So only 2-3 colleagues know that I have a strange illness.
Sometimes I think I wanna all of my colleagues understand me with EDS, but on the other hand, some of them might look at me as a lazy person because my condition is worse really easily. In fact, I have autonomic dysfunction and a few times hospitalised since I was 16-17 yo before I suspect EDS, my condition is often worse even now because of that. I keep having slight fever almost every day during a year (already since 3 years ago at the moment, before Covid-19, you know), that means, there is a possibility I suddenly take a day off easily.
You might think ‘Take a day off if your condition is not good. That’s all.’
No. Here is Japan. Sadly, we don’t have such a standard. If I have high fever or a flu I can take a day off without any worrying. If the bad condition comes from the other reasons, people think I should go to work. Remember, I never want to go to work in the situations, BUT such a mood covers over Japan. Very severe.
Well, just my complains in the end, I wanna know much more how EDSers live with EDS in the world. So I like to take a look at their instagram. I’m interested in finger splint DIY as well.
I wanna try to make one like that too. I bet my fingers would be twisted though.
Why do I say like that at last? Finger splints aren’t sold here at all!!!!