Sick kids now have own social network, Upopolis, to stay connected

Christina Papaevangelou spent too much time in hospitals as a teenager and learned how isolating and lonely the life of a patient can be.

Christina Papaevangelou spent too much time in hospitals as a teenager and learned how isolating and lonely the life of a patient can be.

She was 15 when she contracted a strange illness and was eventually diagnosed with toxic shock syndrome, requiring a long hospitalization.

She remembers how scared she was, surrounded by strange smells, noises and equipment, and how “not so great things are happening to you.”

Later, one of her best friends was diagnosed with a rare form of cancer and, while Papaevangelou wanted to visit her more regularly, her friend was being treated about an hour away.

When Papaevangelou, now 24, was in hospital in 2002, there was no Facebook, MySpace or Twitter, although instant messaging was all the rage.

After her recovery, she wanted to find a way to give back and thought it would really help young patients cope during treatment if they could get Internet access while being stuck in hospitals.

Years later, that idea has sprouted into Upopolis, a social networking site designed specifically for young people in hospitals.

“Kids on one side of the country who have a very rare illness or are going through a very difficult time with a particular disease can connect with and talk to another patient at another hospital across the other side of the country, who may be a bit further along with their treatment and they can talk back and forth about what to expect,” Papaevangelou said.

“It really is more than just the social network — much more actually — it’s kind of a place where patients can meet other patients, support each other through the difficult times they’re going through and connect with people who really know (what it’s like) or can relate to them.”

The website allows users to send messages to one another, write blogs or posts on discussion groups, play games, send and receive virtual gifts, browse news and read more about their illness in a kid-friendly information section.

Upopolis is connecting patients at six hospitals so far, the latest being CHU Sainte-Justine in Montreal, which just went online. Spokeswoman Sandrine Camera said already the kids are extremely excited and “very impatient” to get their turn.

“The kids can feel quite lonely so it’s trying to (deliver) the social aspect and humanize their care, kind of virtually put down the walls of the hospital a little bit,” she said.

“We don’t only have kids from Montreal, we have kids from everywhere, so parents can be very far away. So that gives them an opportunity to receive an email, a little bit of contact with their family, and just that aspect when you say that to a kid is very exciting.”

It’s been a few months since Upopolis signed up Toronto’s Hospital for Sick Children and it’s been a smash success.

“We have 20 laptops right now and we’re possibly getting a few more, because right now we’re at capacity every day and sometimes we have a waiting list,” said Riann Horan, a child life specialist, who added that an average of 20 to 25 patients log on daily.

“We envision it being something that almost becomes a standard: You come into the hospital and somebody explains to you about Upopolis and you get an account almost automatically, so you have that opportunity to log on and connect with other kids.

“The kids are loving the program.

“They’re finding it’s a chance to meet other kids who have a similar diagnosis or just other kids who are the same age or have the same interests and understand what its like to be in a hospital.”

She said the feedback has been amazing and she recently heard from two patients in the hospitals Crohn’s disease and colitis program that said they had only ever met one or two kids with the same condition, but now have a network of 40 they can communicate with.

The site also helps patients stay connected with their school work, which is actually very important to most kids, said Papaevangelou.

“Falling behind in school adds stress to their lives, they want to be able to work on assignments and keep up on their school work because of the potential of falling behind and having to stay back a year,” she said.

“It’s a reality and can be very scary.”

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