Nearly 40 Years with Vasculitis—And Counting
When I called Kristen Dill in mid-July, she was at her summer home in Southwestern Maine, a house on a lake with a big ski mountain across from it. “I’m looking at puffy clouds and a beautiful sky,” she told me.
Kristen Dill is an artist, attentive to life’s details. She grew up in a family of artists and painted and created her whole life. She started as a graphic designer doing paid commercial work, but when a mysterious illness that defied diagnosis for eight years struck her in her late 20s, she felt a sense of urgency and purpose: “Painting my own work and selling it in galleries just didn’t seem so risky anymore,” she said. “I realized: I could die tomorrow. I just need to do this for myself.” The greater risk, she thought, would be never finding her creative voice. It was the early 1980s; she has been selling her paintings ever since.
In fact, when Kristen looks back on her life—including the vasculitis diagnosis that came when she was 35, the most fitting word she can think of to define herself is resilient. When something “rocks your world,” she said, “it’s about figuring out a way forward.” She hopes that her resilience, hard-earned over her three decades with vasculitis, can inspire and remind you: You, too, can carry on.
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It took nearly a decade for Kristen to get a clear diagnosis: GPA (granulomatosis with polyangiitis, which at the time was called “Wegener’s”) vasculitis. She was pregnant with her son and, back then, they didn’t know if the disease was hereditary. Her symptoms flared as the pregnancy continued. “Given all of that,” she said, “it seemed wise not to have another child.” Huge family decisions like that, especially early in her vasculitis journey, were “tough. Each decision felt like a crisis.” She didn’t know anyone else in her shoes; they were doing their best with the information they had, moving forward one day at a time.
In 1986, a couple years before Kristen was diagnosed, a new group, the Wegener’s Granulomatosis Support Group, was founded by Marilyn Sampson, a nurse living with GPA. In the wake of Kristen’s diagnosis, her doctor suggested she reach out to the group. Kristen still remembers Marilyn’s first words to her. “Marilyn wrote me a personal note,” she said, “and sent me a packet of information. She’s a hero to me. She said, ‘You are not alone. This is what we’re here for.’ After eight years of doctors passing me around, I had tears in my eyes.”
In 1990, Kristen attended the group’s first national conference, calling it “extraordinary…It was the first time I met someone who had what I had. You feel like a rare, exotic animal and then, suddenly, you’re part of this tribe. There were two young women like me, 35 years old. I remember connecting with them. Sharing information.” It was a lifeline.
It also was sobering. Therapeutics for vasculitis were limited decades ago. Kristen and the women stayed in touch, but within two years both of her new friends were dead from vasculitis complications. It was a stark reminder of the reality at the time: even when you had a diagnosis, vasculitis was still an unknown disease.
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Despite the loss of her friends, Kristen held to hope. She knew that having the chance to connect with more people living with this disease was going to be critical to finding her way through it. Working with the Wegener’s Granulomatosis Support Group, Kristen and her husband, Bob, helped establish the first chapter of the group in North Carolina, where they were living nine months of the year. At their first meeting, in the early 1990s, they had about 30 attendees, including Marilyn. “We served lunch,” Kristen said, “and had breakout sessions for patients, newly diagnosed patients, and spouses and family members.” Their group met two times a year, and they invited doctors and experts (psychologists, nutritionists, pulmonologists, and beyond) to speak.
Kristen and Bob’s chapter, which continued in person for nearly thirty years up until the pandemic, gave them a “chance to connect, to feel a sense of support, to be with others who are grappling with the same things like fatigue and side effects.” For many of them, it was their first chance to see up close that they’re not alone.
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In the decades since Kristen’s diagnosis, the hard choices and difficult moments haven’t ceased. “Vasculitis,” she admits, “affects everything.” Like that time they were on vacation with their five year old son when Kristen suddenly couldn’t breathe. She wound up in the ER on Hilton Head with an emergency tracheostomy. Kristen says she remembers seeing the stress of it affecting her son and wondering, How should we talk to him about it? Or the ways she and her husband Bob have had to learn to navigate vasculitis together. “It’s such a journey you go on when you’re married and you’re sick,” she said. Questions about taking care of each other, about “bucking up,” about each person’s tolerance for the unknown would arise frequently.
Kristen insists that though the challenges never stopped, her family’s ability to move forward with grace has grown. “A lifetime of accumulating those choices,” she said, “and doing the best you can and forgiving yourself for the ones you might have gotten wrong, you become fairly adept at facing what would once have side-swiped you.” In fact, she feels like she’s been “given a tremendous sense of confidence that whatever my life throws at me, I will be able to figure it out. There are no easy answers, but there’s always a way through.”
Gratefully, a lot has changed since Kristen was diagnosed all those years ago. “Now, the treatments don’t kill you. That’s a real big plus,” she said, laughing.
The losses were real. Marilyn Sampson, whose Wegener’s Granulomatosis Support Group would go on to become the international Vasculitis Foundation (VF), died from lymphoma caused by Cytoxan. “We knew the risks,” Kristen said. “We were educated. We lost people who were valuable to us. It was just part of the treatment.”
Today, she insists, it’s different. Kristen’s not just hopeful, she’s excited. “There are newer and newer biologics,” she said. “All these research studies that have gotten funded by the VF have made a huge difference. In fact, one of the things that has changed the face of vasculitis is the VF’s funding of further specialty training and research for fellows and young investigators, these young, brilliant doctors who are standing on the shoulders of others who have researched before them. It is a game-changer for people living with vasculitis.”
In fact, Kristen believes that the best advice she can give people who are newly diagnosed with vasculitis is to “do the best you can to stay as healthy as you can while we’re waiting for improvements in care.” She urges them not to ignore creeping problems that can turn into severe organ damage. “If you can stay ahead of it (and we can’t always) with your doctor and take responsibility for bringing attention to any new symptom,” there’s hope that you will live into a near future with revolutionized care.
Kristen isn’t just blindly hoping for change; she has lived it. “I’ve seen the change in treatments over nearly forty years; it’s extraordinary. The potential for change in just a year or two, potential that impacts how people live with vasculitis, is great.”
Maybe, decades from now, you’ll be telling a new generation what it was once like to live with this disease. Hopefully, they’ll never know it firsthand.
Written by Ashley Asti
