As a child, Megan Shaw always fell. She bruised easily, seemed prone to accidents, and fainted a lot. As a teenager she discovered that she… Ehlers-Danlos syndrome, a rare genetic disorder that affects connective tissue. But at 23, she’s focusing on what she can do, not what she can’t.
Born in Scotland, she enjoys “wild” (in other words non-pool) swimming in nearby lochs (including Loch Ness) with friends and family. In the winter she wears a wetsuit, but she doesn’t have to wear a brace or tape in the cold water, which soothes her joints. Mountain hikes are also part of her routine, although her backpack comes with a hopper. She is also six months out of medical school and doing a vascular surgery rotation as a physician trainee (the equivalent of a US medical residency program). She wants to pursue a career as a pediatrician.
“Pediatrics is all about helping kids live with what they have,” she says. “It’s about getting their symptoms under control to a point where they can do the things they want to do.”
This is a philosophy that also drives her own approach to the disease she lives with.
She has never personally met anyone who also suffers from this rare disease – although she had checked out some online support forums – but recently came into contact with a teenager in the US who also lives with Ehlers-Danlos. They star in “Beyond Xbox: A Player Like Me”, the next film in the Xbox “Beyond” series, which began with “Beyond Generations”.
“It was actually very easy to talk to him. It was almost like talking to myself a few years ago,” said Shaw, who chatted with Jordan Strong, 15, over a headset while the two played the car racing game Forza Horizon 5. Shaw played from her house while Strong used a GO Kart (Gamers Outreach Kart) system equipped with an Xbox Series S in a facility where he does physical therapy every other week.
The two spent hours getting to know each other while playing the game.
“I’m not that much older than him, but I didn’t know if we’d have anything in common,” Shaw says. “But it turns out we have quite a lot in common.”
They share a love for music. She plays the piano; he sings in choirs. They both have siblings who are able to do things they wanted to do but couldn’t: baseball for him, diving for her.
There was also benign ribbing, as Strong joked about Shaw’s driving skills as they played the game. (In her defense, she notes that they drive on the opposite side of the road where she lives.) They’ve both spent time trying to find each other on the Forza map, too. Their conversation ebbed and flowed naturally, but in between the fun chats, they also talked about serious topics.
“We talked about how sometimes you get medical advice, but in the end you know your own body. You’re the one who has to live with it,” Shaw says. “It’s just nice to talk to someone who understands. I think in the end it doesn’t matter if they are a different age than you or if they are in a different country. My friends or family really support me, but it’s kind of hard to understand if you’ve never experienced it.”
Strong, a high school freshman in a small Georgia town, had never even spoken to anyone else who had Ehlers-Danlos. Even though he and Shaw have different subtypes of the disease, he still found great value in their conversation — and hoped to reconnect.
“It was really cool to see outside of Ehlers-Danlos that we share common interests and understand each other, more than just what you two are going through,” says Strong, who admired Shaw’s active and outgoing life. “That was surprising, how she could kind of set the risks aside.”
The film emerged as the next in Xbox’s experimental storyline that focuses on how gaming can be an important medium for connecting with others, especially during the pandemic. “Beyond Generations”, which debuted in December 2020, showed how a UK-based grandfather and grandson, separated by lockdowns, kept in touch through their headsets and through games.