“Everyone needs to keep rallying around this flagship event and get involved, but in a different and safe way.”
The Arthritis Foundation is proud to announce Deb Constien of Madison, Wisconsin, as the 2021 Walk to Cure Arthritis National Honoree.
Deb has been a mover and shaker for the arthritis community for over 15 years. She first got involved through her local Walk event. “My husband Tim and son Jacob would show their support by heading out there with me year after year,” she recalls. “The Arthritis Foundation has become like a second family for me. The connections you make with other people who just understand what you’re going through is amazing.”
Now a medically retired Registered Dietitian, Deb’s journey with rheumatoid arthritis began nearly four decades ago at age 13, when her foot surgeon analyzed tissue samples and referred her parents to the nearest rheumatologist — a two-hour drive away. It took two years, and many long trips, before she was diagnosed. During that time, the disease wreaked havoc on Deb’s joints, causing irreversible damage.
With one knee replacement now behind her, plus wrist and neck fusions and more surgeries along the way — and even more still in front of her — Deb is grateful for advances in science and medication. She says that since the era of biologics, further deterioration of her joints has been minimal. “I’m fixing the damage that the first 20 years of not great meds caused.”
“I definitely never forget the arthritis is there; it doesn’t let me,” Deb continues. “There are limitations, but I find a way to manage. I still enjoy cooking. There are different tools I use, and the Arthritis Foundation has helped me find those, like handles, grippers and things like that.”
Deb knows firsthand the value of specialized care. “You need a doctor who gets it, who understands autoimmune diseases, medications and the multiple components that go with a systemic condition that also affects organs. No two patients are the same. So, seeing a specialist who can tease out all of those things is incredibly important.”
That’s one reason Deb adamantly advocates for policies, laws and funding to train more specialists and close the gap in the shortage of rheumatologists, especially for marginalized patients in underserved areas. Not only has Deb immersed herself in arthritis advocacy at the state and federal levels, including serving as a longtime Platinum Ambassador for the Arthritis Foundation, but she has also been nutrition leader at Camp MASH (Make Arthritis Stop Hurting) for three years, making sure kids with arthritis get the special diets they need.
In addition, Deb has led a Live Yes! Connect Group in the Madison area for about six years. “We had to pivot last spring to the online Zoom platform because so many arthritis patients are immunocompromised and more apt to get COVID,” Deb explains. “We encouraged people to stay safe and stay home. It has really snowballed and been wonderful for the Connect Group community. There’s more participation now than ever, and you can get involved wherever you are.”
Deb says subject matter experts like rheumatologists often lead the discussions, speaking about whatever topic the group is interested in, such as the latest about COVID. “People really need to stay connected, touching base and seeing, ‘How is everyone hanging in there?’”
Out of an abundance of caution, the 2021 Walk to Cure Arthritis will again be held virtually, as it was last year. “We’re encouraging folks to think outside the box,” Deb says. Ideas range from coming up with friendly, competitive contests around fundraising to having scavenger hunts that get people out of the house while socially distanced. “Let’s get creative so people want to get involved,” she adds.
“It’s so important to raise funds for programs, education, research and everything else the Foundation does for the arthritis community,” she concludes. “Everyone needs to keep rallying around this flagship event and get involved, but in a different and safe way. We’re a community, and we’re all here to support each other.”
—By Tony Williams