When Wendi Lipsich was a sophomore in college, she started experiencing joint pain. Many times, she was able to write it off as a small injury from the gym or from a party. Still, she’d make appointments at the wellness center to get it checked out, but by the time those rolled around a few days later, the pain would be gone. This happened every few weeks.  

“I was fortunate that my stepfather was a doctor. When I came home for a break, I told him about the pains I’d been having. He knew right away that I needed to go to a rheumatologist,” she said. “The rheumatologist did all of the bloodwork and the markers showed right away that I have lupus. So I was extremely blessed to have someone there who got me to the right place, right away.”  

Doctors told Wendi that she could still live a long and healthy life if she maintained a particular regimen, so she asked what that regimen would be.  

“He said, ‘You need to make sure you get sleep, you’re not under too much stress, and you can’t go out in the sun.’ That’s when I started crying,” she said. “Now, I know that was immature because I wasn’t thinking about all of the other things that could happen. But at 20 years old, I was in the sun all the time, and that was honestly the hardest hurdle for me then.”  

It took multiple tries for Wendi to find what medication worked for her. Throughout that process, she dealt with intensifying pain, to the point where she thought she’d actually broken her wrist. Thankfully, she did eventually find a medication that addresses her needs, which allowed her to continue pursuing her dreams, including spending a semester at sea, completing her pre-law program, and pursuing law school.

Her next significant hurdle came when she wanted to have kids.  

“My doctors told me that I was a high-risk pregnancy and we’d have to be very careful,” she said. “I had minor complications, and I did have to change medication so it would be safer for my baby, but I ultimately did manage to have healthy pregnancies and I now have two children.”  

Although being a mom of two and working full-time for the government kept Wendi busy, she soon added lupus advocacy to the list.  

“I’ve always been very open about having lupus. Even at a young age, I felt strongly about telling everyone about it and explaining it because no one knew what lupus really was,” she said. “So in 2004, when Woody Johnson created the Lupus Research Alliance on behalf of his daughter to raise funds to find a cure for lupus, they started with holding their first walk in New York. When they were looking to expand, my friend Ali and I wanted to start a walk here in Florida.”  

This event, called South Florida’s Walk With Us To Cure Lupus, is now in its twentieth year. The efforts of Wendi and Ali have raised over $2,000,000 in that time, every penny of which goes straight to lupus research. The event has also grown significantly over that time.  

“From the beginning, we built the walk to be a social and family friendly event. Our first walk had probably 250 people there. We also had a bounce house and face painters because we had our own young kids,” she said. “Today, everyone still brings their families, and our biggest walk has had over 1,000 people.”  

Wendi believes that her visibility at the event helped contribute to improving lupus awareness – and helped her set an example for her children.  

“I looked healthy, Ali looked healthy, so people who attended would come ask us, ‘What’s lupus?’” she said. “When my kids saw me speaking up on stage, I wanted them to see that I was empowered to do this. I wasn’t just someone with a disease.”  

Today, at the age of 55, Wendi has settled into her care routines.  

“I do blood work twice a year and my levels are always good. In recent years, a lot of people have been switching to new medicines when their meds aren’t working as well,” she said. “So it’s kind of crazy that I’ve taken the same medication for 33 years.”  

As a result, lupus doesn’t significantly inhibit her day-to-day efforts, as long as she continues to stick to that 33-year-old regimen.  

“Part of my job includes travel, so if I go on a trip, I do have to be more cautious that I’m getting sleep, paying attention to when my body pains come up, and overall being very conscious of my health,” she said. “Last fall, I was in Argentina and Uruguay. There’s always an underlying concern that something could happen while I’m in a foreign country. But for me, the longer I live with this disease, the less worried I get; and now, at my age, I wake up with aches and pains that are due to my age rather than my lupus.”

After over twenty years of lupus advocacy work, Wendi knows that, too often, different people receive different care from medical professionals.  

“Women have to be their own advocates, in every aspect. We have to go that extra mile, put a little extra pressure on doctors, in order to be heard,” she said. “You can’t be afraid to go get second or third opinions when needed because it’s so important to find a doctor who pays attention to you.”  

And after more than thirty years of living with lupus, Wendi knows the positive impact a reliable community can have on someone living with a chronic illness.  

“I have amazing support from my kids, my husband, my family, this whole team that is backing me up and always there for me. Having that strong support system is so key,” she said. “So I feel very, very fortunate. I have this disease, but I don’t feel like I’m alone with this disease.”