STAR, Idaho — The Treasure Valley hosted its first-ever Walk-to-End-Lupus in Star, marking a historic milestone as the first lupus event held in Idaho.
In Star, the color purple and butterfly wings filled Freedom Park as walkers gathered for the inaugural event. The goal was to bring visibility, community, and hope to people living with the autoimmune disease.
Event organizer Jean Wolford has lived with lupus for decades — a disease that affects multiple organs and can be life-threatening without proper diagnosis and treatment. Her journey with the disease began early in life.
"I actually started showing signs at 3 years old. 12 years old, I had arthritis really bad, but it was never diagnosed because I lived in southeastern Idaho, and it wasn't common. After I had my first child, at 20, it... I flared enough that it took them only 2 years to finally be able to give me a diagnosis around 22, and at that time it was a, death sentence," Wolford said.
"This is our inaugural walk, but it's also a first lupus event ever held in Idaho," Wolford said.
Check out Idaho's first-ever Walk-to-End-Lupus event—
Wolford's personal journey with the disease has been challenging, facing multiple dire prognoses over the years.
"I've been given 5 years to live multiple times until the research started kicking up," Wolford said.
The disease occurs when the immune system attacks the body itself.
Matt DeGooyer, vice president of the Western United States for the Lupus Foundation of America, traveled to Idaho specifically for this groundbreaking event.
"The reason I came to Idaho is really, we had some incredible volunteers here in Star who wanted to do something to raise awareness for the Lupus Foundation and about lupus, the disease, and so they really put this together themselves, and so I'm really here to thank them. To help raise awareness about lupus and really to celebrate with this incredible community," DeGooyer said.
Lupus is an autoimmune condition that can affect any part of the body.
"Normally our immune system protects our body, but for some unknown reason, with people with lupus, the immune system misfires, and so the immune system starts to attack different parts of the body. What's difficult about lupus... it can show up anywhere in the body. Common areas are attacking the skin, joints, like joint pain is a significant issue, and extreme exhaustion. Almost like somebody pulled your battery pack out and you're powering down and you don't have the energy you need to do what you need to do every day," DeGooyer said.
Steve Day, a co-chair for the inaugural lupus walk, was diagnosed with lupus two years ago after experiencing complications from knee replacement surgery.
"About two years ago, it'll be two years this October... I had a same-day bilateral knee replacement, a total knee replacement. And so for the last two years, they haven't been healing. I've been swelling up, and I get them drained, and they swell up and... very painful. So after all the testing for different allergies to the metal and whatnot, those were all clear, and then they finally tested me for all the autoimmunes, and I was diagnosed with lupus," Day said.
Despite his own diagnosis, Day emphasizes that his experience is mild compared to others.
"That's why I love being a part of of this. My affliction with lupus, is very mild compared to so many others that have Crohn's or lupus or any other disease, so it's not about me. It's about all these great people that are here. And we're very appreciative of all the support," Day said.
Day has been a Star resident for about eight years, having lived in the Treasure Valley for approximately 10 years total.
One of the most recognizable symptoms is a butterfly-shaped rash across the face.
"When we get a flare, we get a malar rash and it. You can't miss it, and it looks like rosacea, except it's in the shape of a butterfly," Wolford said.
"And then somewhere along the way they picked purple as their color," Wolford added.
"And it's perfect because it's my favorite color, so it was destined to happen."
DeGooyer praised the grassroots nature of Star's inaugural walk.
"I think what makes this walk unique and special is really the way the community brought it together themselves. We do some large walks in other communities, but those are staff-driven by the Lupus Foundation of America. This walk was organic through. Community and people who care about this disease put it together, so it's simply amazing," DeGooyer said.
The significance of Idaho's first lupus walk extends beyond the immediate community.
"So I think it's incredible that this community has come together to raise awareness about lupus, and it's the first-ever walk in Idaho for this disease and this condition. And so I think it means a lot for the state of Idaho because more people will learn about the disease... hopefully get diagnosed earlier. And by doing so, they can get treatment that will prevent damage to their body in the long run. So this helps not only the people who are here today talking about their own disease, but it helps other people who don't know yet about their condition and that they may have lupus," DeGooyer said.
Diagnosis remains a significant challenge for lupus patients. The disease is often called "the great imitator" because its symptoms can mimic other conditions.
"Lupus can really show up at almost any age. Sometimes people are diagnosed as children, sometimes, well into adulthood," DeGooyer said.
Day serves as an important reminder about invisible illnesses and the need for community understanding.
"Well, the message I want to get out is don't judge a book by its cover. Everybody's dealing with something. And those who are dealing with lupus or Crohn's or any other autoimmune diseases... they may be smiling, but they're in pain," Day said.
"So, let's just you know, gather around everybody. You know, Star is one community. We all love each other, we all care about each other, and that's the way Star will always be. So, my hope is to find a cure one day. For lupus, cancer... all the diseases that there's no cures for. So if we can go to the moon, we can find a cure for lupus, cancer, and the rest of them," Day added.
The walk featured two one-mile route options designed to accommodate participants with varying energy levels. The first route follows paved paths along Freedom Park with benches available, while the second option includes unpaved greenway trails.
The event included an opening ceremony with the American Heritage Girls performing a flag ceremony, followed by remarks from organizers and the mayor before participants cut a purple glitter ribbon to begin the walk.
With only approximately 1,400 people diagnosed with lupus in Idaho, the disease remains relatively rare in the state.
Treatment options for lupus have expanded significantly in recent years, offering hope for patients.
"I think there are two main goals or hopes for this event today and for all the work we do at the Lupus Foundation of America. The first is to really reduce that time to diagnosis. On average, it's six years to get a diagnosis. By getting diagnosed earlier, we can reduce the damage on the body. And then the second component is really to try to improve the number of treatments that we have for lupus. Seven years ago, we only had one treatment for lupus. Now we have three, and there are 140 new studies underway currently for new interventions that can help in the future for people with lupus. So while it's a very difficult disease, we hope in the future we'll have a lot more interventions to improve the quality of life for all people living with lupus," DeGooyer said.
Wolford's motivation extends beyond her own experience with the disease.
"I'm doing this for my future grandkids, my future great-grandkids to help them get better treatments and better quality of life," Wolford said.
Wolford made it known that the Walk-to-End-Lupus event wouldn't have come to life if it weren't for River of Hope Community Foundation.
"They helped me get my event insurance passed because I wasn't getting anywhere. They've donated time. They've donated money. They've been mentors. They've just, I mean, held my hand through the whole thing," Wolford said.
Organizers hope the event's success will lead to the establishment of an Idaho chapter of the Lupus Foundation of America.
"Well, so right now we're into the Seattle, Washington chapter because Idaho doesn't have its own chapter just yet for the lupus walk. So our hope and prayers are that we've had such a great turnout that we can actually eventually get our own chapter here in Idaho, and it'll just keep growing. Right now, we have hundreds and hundreds of people here that are out to support and walk for the many people that they sponsor through donations, and so that's our hope is to grow this. We just want to make it as big as we can, get as much exposure as we can," Day said.
Beyond the annual walk, organizers plan to establish ongoing community support through a local lupus group.
"So next with this walk is we want to keep the awareness going. So we are starting a local lupus group for anybody. That has lupus or families that have people that have lupus, and it's not just gonna be your typical support group. It's going to be giving back to the community. It's going to be doing crafting and events. It's gonna be things that are positive that help us," Wolford said.
To get involved with Star's Lupus groups, you can follow them on Instagram @walktoendlupusidaho or on Facebook at Walk to End Lupus Idaho.
