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Ehlers-Danlos Syndrome Awareness Month

May 31, 2016

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Look! A video!

It’s not the happiest video at the moment, and I’m sorry, but we really wanted to do something for EDS Awareness month while we still had the time. We talked about making this video for a while, and we started planning something, but then Martina had to get back to Canada immediately for a family emergency, so we didn’t have time to make the video we wanted to make. I didn’t want to lose this chance, though, and I wanted to talk about EDS from another perspective.

What’s happening now is still pretty new to us. In Korea we just drove everywhere, but now that we’re in Tokyo, we’re taking public transportation everywhere, and it’s pretty tough on Martina. Some stations don’t have escalators or elevators, and when she has to climb those stairs it’s really a challenge. It’s also challenging when she has to take the elevator, but in a different way. What do you do on busy days, when you’re waiting in line for the elevator, and behind you in line are an old lady and a woman with a baby carriage? How often do you step aside, how much longer do you stay standing than you need to? And when you do take that elevator, how do you not feel shitty for it? How many people are looking at you and thinking you’re an asshole, or that you’re a lazy foreigner that doesn’t have any respect? It’s really tough for Martina, and some days she’d rather climb the stairs than deal with the shame. She feels guilty and shitty for it, but she needs to use it, and there’s no way she can convey that to onlookers the way old age and baby carriages can.

I actually remember similar circumstances with my father. He has a handicapped parking permit, and has had it for many years of my life, and I remember people shouting at him for using the disabled parking spots. They’d ask him “you know that’s for handicapped people, right? Do you have a disability?” And I felt terrible that my dad has to justify to strangers that he’s never met and will never meet again why he has a permit. Why can’t he go on with his day? Why does he have to stop and tell you about his condition? He was having a fine day, and not thinking about his illness, out with his son, and you have to pull him out of that and make him prove his merits to you. For what? Your thirst for justice?

So I’m hoping this video in some small way can help make people reconsider what it means to have a disability, and to make some people aware that not all disabilities are visible.

But that’s kind of hijacking the main point of this video, which is to raise some more awareness for EDS. May’s the month for it, and I’ve got a couple more hours to publish this before it’s not May anymore! Here, check out the Ehlers-Danlos website for more info. There are a few different kinds of EDS. Martina has type 3: hypermobility. We’re actually going to see a specialist in Tokyo for the first time ever! We’ve been waiting for months, and we finally have an appointment with him. Martina’s never been to a specialist for EDS before, and she’s had really bad, hopeless experiences at other doctors. But not all hope is lost: here’s to hoping our appointment this month works out well!

Otherwise, we’re going to have some happy videos coming soon. We’ll be filming Eatyoursushi! We’ve got another video almost edited and ready to publish, probably for Thursday! And now that Martina’s back in Japan, we’re going to start filming some more videos. We’ve got some big ones in store for June :D Yay!

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Ehlers-Danlos Syndrome Awareness Month

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  1. Hey, I was wondering if you knew when the shirts would return to the EYK Store? Please take my money!!

    3 years ago
  2. Hi,

    Not sure where to start. My wife has been a fan of yours for years, long before she became a YouTuber in Osaka.

    She’s suffered from chronic pain for about six years. She hasn’t been diagnosed specifically with EDS, but she was diagnosed with hypermobility a long time ago, and we’ve only put it together recently that EDS might be the reason she hurts doing everyday things.

    I would appreciate it so much if you could let us know about the specialist you saw in Tokyo and if it’s worth it to go.

    My wife follows you on Twitter if you prefer to answer there. She’s @Yunae. If you have time.

    1 year ago
  3. Hi Martina,

    Have you tired any dietary supplements for your illness?

    I have proctitus and the Meds the dr gave me are causing me to loose my hair.
    Because of this I am looking into supplements.
    I wonder if epicor or cats claw would help you?
    Recently I also placed an order for Greek Mountain Tea,
    It came in today I look forward to trying it.
    Also I placed an order for a supplement called epicor. It should be in soon.

    Feel free to read about the supplements I mentioned, I do not know if they would help your condition. If not there has to be a natural remedy out there for you.

    Let me know what you find in the way of supplements and progress.

    With the internet we can find what has worked for others who have our issues and try it!

    Later,

    Warm regards,

    Jamie

    Jamie

    3 years ago
  4. Hi guys. I feel like I am really lucky to be generally in good health. It’s something a lot of people take for granted. As I’ve gotten older, I’ve thought a looooot more about ‘invisible disabilities.’ I’ve had my own issues with depression (mostly in the past, thankfully), and I still have issues with things like panic/anxiety.

    I remember that when I was younger (full of that clear self righteous judgement a teen/young adult has), I would give second looks to people that seemed like they were healthy using handicapped parking. Now, my boyfriend is dealing with a back injury that makes it extremely difficult to walk sometimes, and I WISH we could get a placard for him.

    Thank you for sharing this video and your perspective, Simon. I really hope the specialist visit goes well. I’m glad doing videos brings Martina joy, because it brings me joy to watch them.

    3 years ago