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Dear Scientist, Osteoarthritis has debilitated four generations of my family. What does the future look like for relief?

For three decades, Karen Marie Hedlund has suffered with chronic knee pain, just like many other women in her family. In talking with Dr. Peter Park, she learns what researchers are doing to help improve the lives of so many like her.

 

For three decades, Karen Marie Hedlund has suffered with chronic knee pain, just like many other women in her family. In talking with Dr. Peter Park, she learns what researchers are doing to help improve the lives of so many like her.

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“Doctors are very good at telling you the clinical definition of things. I was told osteoarthritis means there’s no cartilage left; that it’s bone on bone. But what they don’t tell you is that it can lead to not getting out of bed, it being impossible to go up and down stairs, and being unable to do chores because you can’t even bend down.”

— Karen Marie Hedlund 

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A life with chronic pain

Karen Marie Hedlund, 48, was formally diagnosed with osteoarthritis (OA) in 2016. When her orthopedic surgeon presented her the x-rays of her right knee — which had grown increasingly painful and swollen over the years — she saw the evidence laid bare. The black and white image showed that no cartilage or soft tissue remained in her knee joint.

Young Karen Marie (center) with her mother, grandmother, and great-grandmother, who have all been diagnosed with OA.

“I knew that my great-grandmother, my grandmother, and my mother all had osteoarthritis,” says Hedlund. “And I knew there was always a possibility that I would have it too.”

Beyond having a family history, Hedlund suffered a serious knee injury in high school gym class. That moment, at the age of 16, acted as the first domino in a string of knee issues to come. She underwent her first knee surgery in the summer after sophomore year and got back on her feet before college — but not before she received a final note from her doctor.

“My surgeon told me that I would need to have a full knee replacement in my forties,” says Hedlund.

But when she received her diagnosis in 2016, at age 44, Hedlund was told that a full joint replacement — the only option available to many patients with OA after they have exhausted all available therapies— would have to wait, possibly until she’s in her sixties.

“That was very frustrating because that was basically the only treatment that I had not tried — and yet I’m still not old enough to get it?” says Hedlund. “I’ve done physical therapy, taken medications since I was 16, have used knee braces, and gotten cortisone shots. But it all feels like it’s delaying the inevitable.”

OA is the most common type of arthritis, impacting approximately 31 million Americans. It can affect any joint, but is especially common in the hands, knees, hips, lower back, and neck. Its effects are individual, but it makes movement in the affected joint anywhere from painful to excruciating.

Hedlund does her best to navigate life with OA, but, she says, “pain is my constant companion.” These days, she enjoys time with friends, takes daily Zoom calls with her nephew, and finds support through the Arthritis Foundation. But what she craves most is answers. What is being done to help people like her who suffer every day with so few options for relief?

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Personal stakes

Thankfully, there are doctors, researchers, and specialists on the ground working to try to give Hedlund some of the answers she’s looking for. One of whom is Dr. Peter Park, a medical lead at Pfizer who oversees a team of 120 medical colleagues, physicians, pharmacists, and scientists who work to help improve the lives of patients living with various diseases and conditions, including OA.

“One of the things we do is to work with organizations,” says Park, “such as patient advocacy groups and healthcare organizations, to understand patients’ experiences for a variety of medical conditions as well as what needs exist, so we can provide resources to try to meet those needs.”

Since no new treatment approaches have been available for patients with OA in over a decade, Park and his team concentrate plenty of effort on learning how they can provide new ways to help improve the current standard of care. Especially considering the toll OA takes isn’t just physical.

Before her diagnosis, Karen Marie enjoyed traveling—but her knee pain still followed.

“When the cartilage, which serves as a cushion between your bones, breaks down, it can lead to a host of symptoms, like pain, inflammation, loss of flexibility, and swelling,” says Park. “But these debilitating effects can also lead to emotional struggles, which can really have a negative effect on patients.”

Park’s understanding of OA comes from clinical experience as much as personal. He was diagnosed with the condition in his late thirties when ongoing back pain became unbearable. In an added twist of fate, Park was the global medical team leader for a medicine used to help patients with OA at the time of his diagnosis.

“My diagnosis definitely helped me think about the work I was doing from a more personal angle,” says Park.

With diet and exercise as well as physical therapy, Park has been able to live a relatively normal life since his diagnosis. But he knows that’s not the case for all — and that more treatment options are needed.

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Sharing perspectives

On January 29, 2021, Hedlund and Park had the opportunity to talk about what it’s like to live with OA, as well as discuss the work being done to develop potential new treatments. Sharing two sides of a screen, they exchange virtual pleasantries, and Park shares that he, too, has OA.

“It’s an unfortunate connection to have,” says Hedlund with a gentle laugh.

“I know what you mean,” responds Park. With that, the two begin a thoughtful conversation, starting with Park bringing up Hedlund’s letter, in which she describes her story and lifelong struggle. 

Both understand the difference between being given a diagnosis and living with what can be a debilitating condition, and both are looking ahead to what the future might hold. Park is eager to know what Hedlund hopes for the future of treatment and asks her what she would most look forward to seeing happen down the line.

Her answer has two parts. The first centers around genetics research, the ability to predict who is more likely to develop OA, and any preventative measures they could take. The second presses on the issue of there being no new treatments available for patients who have not found relief with current options. “This needs to be taken seriously in research,” she urges.

Her friends and the community in the Arthritis Foundation help Karen Marie stay positive during difficult times.

Park agrees and responds to both of Hedlund’s points. “There are new treatments being researched that are trying to do more than just mask the pain. Some treatments that are being looked at now are really trying to hone-in on the pain pathway as well as show that patients may be able to participate more fully in their daily activities.”

He describes how what’s in the works now won’t necessarily modify the course of the disease, so early prevention still needs more attention, “but that would be the ultimate hope, to prevent it before it even starts.”

One thing both Park and Hedlund adamantly agree on is the importance of support when it comes to dealing with this condition. Hedlund credits her incredible medical team for helping her to navigate the physical aspects of OA, but she gives just as much credit to those who help lighten the emotional burden.

“The Arthritis Foundation has been a huge help, especially in the last year because they have great resources,” says Hedlund. “There’s also a Facebook group of people who get it, who understand how isolating it feels, and who I don’t have to explain myself to. It’s so important and accepting.”

When their conversation wraps up, both close their screens understanding that in addition to their close circles — Park with his team of researchers and physicians working to advance treatments for OA and Hedlund with her family, friends, and support networks — they now have each other, a connection in condition and passion for building a more hopeful future for millions of others like them.

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This content was produced by Boston Globe Media's Studio/B in collaboration with the advertiser. The news and editorial departments of The Boston Globe had no role in its production or display.