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For Jordyn Burger, 30, planning ahead is essential. “I need to know what I’m dealing with when I’m going to do things,” she says. “Like if I’m going to be in Harvard Square, do I still know where all the bathrooms are? I used to have a note in my phone with all the different bathroom codes.”
Jordyn was diagnosed with ulcerative colitis (UC), an inflammatory bowel disease, when she was 17 years old. UC is a chronic condition that causes inflammation and ulcers along the digestive tract, which can be debilitating and cause serious complications. Common symptoms include diarrhea, abdominal pain, and fatigue.
As a high school senior and then a college student, a chronic condition was the last thing Jordyn wanted to worry about. She had classes to take, friends to make, and a whole life to plan.
At first, besides taking medicine to ease her symptoms, “I just kind of ignored it,” Jordyn admits, “which sounds pretty silly now. But I was in college. I wanted to drink, I wanted to party, I wanted to do the things everyone else was doing. And if that meant that I was going to be sick, I kind of just rolled with it, which is not the way you should do things.”
A turning pointJordyn graduated with an engineering degree and started a full-time job, but her UC symptoms were getting worse. Some nights, she slept on the cool tile of her bathroom floor, trying to get enough sleep to make it to work the next day. “Because I was in so much pain and going back and forth to the bedroom, it was easier to just stay in the bathroom,” she says.
She knew something had to change. “I’m an adult, and I want to feel okay,” Jordyn remembers thinking. With the help of her care team, she made the decision to start a different therapy. It took years of making adjustments to her treatment plan but eventually, in 2019, Jordyn reached clinical remission.
In addition to feeling better physically, Jordyn gained something else during this time: a community. At the suggestion of a patient she met at an infusion appointment, Jordyn went to a local Crohn’s and Colitis Foundation Take Steps event. “It was all these shirts with poop puns, and all these patients, and it was just very positive energy,” she says. “Honestly, that was the gateway. That was 2015. And now I’ve been working with the foundation since then.”
She started attending Saturday walks and runs to train for a half marathon through the Foundation’s Team Challenge program. “Suddenly I’m hanging out with people who are my age and my mom’s age,” Jordyn says. “They have families, and I’m seeing the lives that I can have, and live, and be okay.”
More treatment options, more potential treatment options
Meanwhile, Dr. Sheldon Sloan, vice president and gastrointestinal (GI) program leader at Pfizer, has been leading teams researching and developing treatments for people like Jordyn, who have inflammatory bowel diseases including UC. Before entering the pharmaceutical industry, Sheldon was a practicing gastroenterologist. “It was a fairly easy transition, moving from helping individual patients to doing research to help a broader group of patients,” he says.
When Sheldon was in clinical practice, there were limited options for treatments. “Back in the day, our only options were really to treat UC patients with steroids on top of their baseline therapy,” he says.
“Today there are so many more options,” Sheldon says, including immunosuppressant infusions and shots attacking different disease pathways, as well as advanced oral therapies.
But not all treatments impact patients the same way and resistance to treatment can develop over time if patients develop anti-drug antibodies. That’s why it’s crucial that UC patients have a variety of options to give them the best chance of reaching — and maintaining — remission.
Sheldon and his team are working to develop potential new breakthrough options for these patients. They are working to “offer another option for patients, either as a first treatment or, if they didn’t respond to something else, another option for them,” says Sheldon.
People who ‘get it’
Sheldon and Jordyn met in person for the first time at Pfizer’s Kendall Square campus in July of 2022.
Jordyn reads a letter she’s prepared for Sheldon, ending with a poignant question: “How are you working to help get patients the medicine they need as quickly as possible?”
Sheldon explains that he’s leading a team that’s developing potential therapies to hopefully help patients. But there is another side of his work. “Most important for us is to know the journey of the patients — what they’re going through and how, ultimately, we can help your journey be better.”
He asks Jordyn about how UC has affected her life, especially since she was diagnosed at such a pivotal stage.
“I identify as a chronically ill, disabled person,” Jordyn says. “I was trying to be an engineer, and work hard in school, and get a good job, and all of those things that I assumed were next. I thought that those things would hold me back — that those labels were a barrier, and in reality they’re an asset. They help me be an empathetic person.”
Though she’s accepted UC’s role in her life, Jordyn does hope that the future looks different for others diagnosed with UC. Specifically, she says, she hopes patients can find the right treatment for them and reach remission more quickly than she did.
“There’s no drug that’s 100% effective for everyone,” Sheldon agrees. “Without different mechanisms, patients won’t have the options they need.”
The approach to finding different kinds of potential treatments for UC being taken by Pfizer and its peers could help make Jordyn and Sheldon’s shared vision a reality.
Sponsored by Pfizer
Jordyn’s Letter: “I hid my illness from others, worried about how they would view this stigmatizing diagnosis”