Ehlers Danlos Syndrome
December 27, 2011 by staff
Ehlers Danlos Syndrome, How I Stopped Worrying About Ehlers-Danlos Syndrome and Started My Own Video Game Blog, Hi, my name is Avery; I’m a 15-year-old gamer and blogger. I’m shocked and amazed that I’ve been asked to write a guest post for Kotaku! Am I famous now, or what? I’ve recently started a cool gaming blog, which has a bit of a story behind it.
When I was around five, my dad realized that he had a rare genetic collagen disease called Ehlers-Danlos Syndrome, Hypermobility Type. Most people just call it EDS III—probably because nobody seems to know how to pronounce it. Worse, he realized that I probably had it too. I wasn’t having any major problems then, but my dad was, and he was having issues finding a doctor who could diagnosis him. The one doctor he found could only diagnose females, but she told my dad she thought he was right and to keep a close eye on me. A few years later I was showing some pretty serious symptoms. I was becoming frail and having problems walking. We went to see a doctor at Toronto’s Sick Kids Hospital who had some familiarly with the disease, and he promptly diagnosed both me and my dad. Up until that point I was sort of hoping that my dad was wrong. So, I started seeing different doctors at Sick Kids, which became a kind of second home. With my being hugely underweight and having pain in my joints and chest, as well as suffering joint subluxations and stomach problems, we thought things couldn’t get any worse. Well, as it turned out we were only in the eye of the hurricane, and the full brunt of the storm was about to hit.
My weight began to drop even lower, and I was having trouble swallowing. Then, one day the pain in my chest got a lot worse and began to spread. My parents rushed me to Sick Kids and all kinds of specialists were brought in. To make a long story short, the doctors quickly got on top of the weight issues; but the pain? Well, they couldn’t figure that one out. My dad thought it was coming from bone disease, but he was told he was wrong. The pediatricians thought kids with EDS only got pain from dislocations.
Fast-forward a few months and a geneticist determined that I have Osteoporosis coming from my EDS. I think he thought we were surprised. He had seen me before, and he told us that he didn’t expect it to get so bad so fast. So off we were to see a bone expert (who is a really great doctor by the way). After a chunk of my hip was drilled out for testing, I began treatments for severe Osteoporosis. For a while I used a power chair, but after years of physiotherapy and treatment, I rarely use it. That’s the good news.
The bad news is that my two diseases still cause me pain and that none of the drugs the doctors gave me ever worked for the pain. I also haven’t been able to go to school for years, but my mom is a terrific teacher, and when I was recently tested I was getting nearly a hundred percent in math! I’ve missed out on a lot of experiences that kids get at school, but I’ve also been able to hang out with my parents and become a lot closer to them. So what do I do to deal with the pain? I play video games—a lot! There’s a reason why the Child Life volunteers at Sick Kids hand out gaming consoles to inpatients.
As many chronically ill people might tell you, especially teenagers, it can be hard not to fall into depression. Sometimes, it really is a struggle to stay positive when times are hard. Luckily, I’ve had some good friends to help me in my battle against depression, and to distract me from the problems my ailments give me. Those friends are Mario, Link, Sonic, Cloud Strife (maybe he’s not the best example) and many other characters from the world of gaming. I’m sure everyone, at times, has wished that they could live in, or visit, a totally different realm of existence. That’s what video games mean to me. They are whole worlds with their own rules, their own people and things, just waiting to be explored.
So, naturally, when my father asked me what he could do to help me when I was depressed this last summer, I told him that I wanted to make a blog about video games. Thus my blog was born. At first, I named it “I Have Fury,” the name mostly inspired by a quote from my favourite game of all time, Mario & Luigi: Superstar Saga. My dad bought the domain name for five years and told me that he was completely behind me for that length of time; but that there was no pressure. I could do as much or as little as I wanted with the blog. I set up the blog, and I went to writing. News, reviews, cultural pieces; anything game-related that caught my fancy. I Have Fury was a great help to me. It kept me occupied and prevented me from dwelling on all the negative things. I learned basic HTML and CSS, among other skills along the way, and enjoyed playing around with my site. The fun really started, though, when my father came on board recently as a writer! Now, together we’ve made a site filled with (hopefully) funny jokes and positivity. We write articles together, and the house rings with laughter. My mom helps out by reading through the posts for grammar and spelling errors—after they’ve been posted.
Something that I didn’t think about when starting the blog was the sheer amount of work necessary! As a reader, I had never really thought of the work involved in blogging, aside from the writing of the posts themselves. Articles require research and fact-checking, images have to be collected for posts, and copyright laws must always be respected. Then there’s site design. Since the blogging platform I’m using doesn’t offer it by default, I had to come up with my own (simple) captioning system, and it took quite a while to get the site to look the way it does now. Recently, I decided to change the name of the blog to Pocket Chomp, inspired by a cool item in a different Mario & Luigi game. So my dad had to buy a new domain name. Then the work really began. I had to move all the posts over manually to the new blog, set up the domain mapping, redesign the banner, create a new Facebook account, rename our Twitter account, etc. All of that took days. But, there is fun to be had in designing the site, too; like when my dad drew our banner hero on an iPod touch. He drew it to look furious, to match the original name; but, thankfully, we found that it works pretty well for the new name too.
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