Sharon-JobeIn the 1980s, Ronda Palmer constantly felt tired and had far too many aches and pains for a teenager. After years of appointments, one doctor finally pinpointed the source of her pain: lupus, an autoimmune disease where the immune system attacks different parts of the body including the kidneys, joints and lungs.

“I’ve never really been able to have a full-time job because lupus is so unpredictable,” Ronda says. “Sometimes you just hurt for no reason — your knee will hurt so badly that it keeps you up all night, but you’re fine the next morning.”

Decades after Ronda’s diagnosis, her then-teenage daughter Cori started showing similar symptoms.

“I knew in my heart it was lupus — it was heartbreaking to know she would have to suffer,” Ronda says.

Virginia Mason rheumatologist Jeffrey Carlin, MD, has treated both women for most of their lives. He also diagnosed Ronda’s mother, Sharon Jobe, with lupus around the same time as Cori (she’s had less severe symptoms and manages her disease well).

Dr. Carlin’s motivation to help patients like these has inspired him to research some of the biggest and most important questions about lupus at Benaroya Research Institute at Virginia Mason (BRI).

"We want to understand why the disease manifests differently in different people, why treatments work well for some people and not others, and we want to find more effective treatment options," Dr. Carlin says.

Managing a Little-Understood Disease

When Ronda was diagnosed three decades ago, doctors typically used chemotherapy or steroids to treat lupus. And while chemotherapy helped some people control the disease, it had severe side effects. 

“Lupus disproportionately affects women and often starts in their teens and 20s — and the drug could make women unable to have children,” Dr. Carlin says. “Many patients went on to need dialysis or kidney transplant. Sometimes, nothing worked and the disease was life-threatening.”

In the early years, chemotherapy helped Ronda manage her disease, but it wasn’t easy.

“She was always in and out of the hospital,” Cori says of her mom. “My whole childhood, I was afraid she was going to die.” 

But with Dr. Carlin and her family by her side, Ronda persevered. She was eventually able to better control her disease with a less toxic treatment plan using biologic drugs.

“I’ve had lupus for so long, it's just become a way of life,” Ronda says. “It's still not easy, but treatments have gotten better. And I’ve always had incredible support from my family.”

Planning Life Around Lupus

Denise-Brown-Cori-Broberg-and-Ronda-Palmer-smiling Ronda has two daughters and was always on the lookout for signs of lupus when they were growing up.  

“I was always very aware of any aches or pains they had and they can vouch for me taking them to the pediatrician a lot,” Ronda says.

When Cori started showing signs of lupus in her mid-teens, they knew where to turn.

“I was lucky to have Dr. Carlin with me from the beginning,” Cori says. “I’d seen my mom get so sick and have to use chemo and steroids — that’s what I thought it meant to have lupus. But Dr. Carlin reassured me that there were better options now. He started my treatment with Plaquenil and we’ve added Methotrexate and Benlysta over the years. I’ve able to control the disease before having major joint or organ issues.”

Still, lupus has had a big impact on Cori’s life. She knew she would need a career that would allow her to take time off if her disease flared. She’s now a hairstylist and says her clients are understanding that she may have to reschedule appointments if she’s not feeling well. 

Cori also married her high school sweetheart, Aaron Broberg, who has been by her side since she was diagnosed. She faced her worst lupus flares as they were starting a family.

“I got very sick and was hospitalized both times I was pregnant,” Cori says. “I’m so thankful to have two healthy kids. But if I hadn't had so many complications, we would have loved to have more.”

Hope for the Next Generation

Dr. Carlin recently retired from medical practice, but his fight against lupus isn’t over. He’s now a part-time researcher at BRI, chipping away at some of lupus’s biggest mysteries.

“Being a rheumatologist is like being Sherlock Holmes,” Dr. Carlin says. “You have to put all the pieces together to solve a mystery and it's never easy. You’d think the same treatment would work for Cori and Ronda, a mother and daughter whose disease manifests in similar ways — but the treatment that works for Cori doesn’t work for Ronda.”

Though studies are currently on hold because of COVID-19, Dr. Carlin will help lead BRI’s lupus biorepository, where patients donate blood samples and BRI’s team uses these samples to learn more about the disease. He’s involved in clinical trials, testing new therapies for lupus, including two medicines commonly used for rheumatoid arthritis (RA).

“In the 1980s, half of my patients were on disability — decades later, I’ve had RA patients run marathons,” Dr. Carlin says. “But that’s not the case for everyone. I want every patient to have good options. We’ve come so far, but we’re not there yet. ”

Throughout their lives, Cori and Ronda have seen first-hand how research can improve treatments for this mysterious disease. And it gives them hope for the next generation.

“My diagnosis was really scary after seeing everything my mom went through, but my experience has been different and better in many ways,” Cori says. “And even in my 17 years of having lupus, they’ve made great progress. It’s so encouraging to see how people are studying options and learning more about how these diseases work. It gives me hope for a better future.”

Category: 
Living With A Disease

June 12, 2020

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