There are some days that Kara Shaw doesn’t even want to get out of bed. Her ankles, wrist and neck joints are so inflamed, they hurt every day. The longtime Whistler’s employee had gone to doctor after doctor, did physical therapy with no results and had multiple tests done.
“I just wanted to know what was wrong,” Shaw, now 20, said. “It was so frustrating and overwhelming—I just wanted to know what was causing this.”
Two years ago, Shaw was diagnosed with lupus, an autoimmune disease where the body’s immune system attacks healthy tissue. Shaw’s joints are affected and she’s often fatigued.
Another Cinnaminson native, Pam Thomas, has very different lupus symptoms. Thomas lost a lot of her hair and has red marks on her forehead. It took about four years for Thomas to be diagnosed with the disease; her skin is the organ it affects.
“I thought I just got really bad sunburn,” Thomas said of first noticing the symptoms. “I’m on medicine for the rest of my life. I can’t go out in the sun or I’ll break out into a rash. My hair isn’t growing back. That’s a big thing for a girl.”
Thomas, 28, has to wear SPF 70 sunscreen daily—and a hat for extra protection on sunny days. Shaw said she stopped taking some of the medications prescribed for her because they just didn’t help. She just takes Aleve for her pain now.
But both of the women want to raise awareness for their disease and are doing so by participating in the 4th annual South Jersey Walk for Lupus Now on the Ocean City Boardwalk, Sunday, May 20.
Shaw, a nursing school student, actually found out about the walk through Thomas’ sister, who posted it on her Facebook page.
“My sisters told me they were going to do it for me,” said Shaw. “I want to make people aware of what it is and how many people are actually dealing with it—what it does to your body and how painful it is.”
Thomas and her family and friends walked last year and have a team heading down the shore this year, too.
“I’m trying to get people involved,” Thomas said. “People don’t realize it’s a bad disease to have. It was a really traumatizing experience when I first found out. It’s something you have for the rest of your life. It could affect any organ in your body—I’m fortunate it’s only my skin.”
The annual 2K or 4K walk raises funds for the Lupus Foundation of America—Philadelphia Tri-State Chapter. Shaw’s mother Renee said she and her family are walking for Kara to find a cure.
“The more we looked into it, the more we thought people should know about this,” Renee said. “I would love to see a cure for this. If they need money to be raised, then I’m all for it.”
Thomas, who now lives in Riverton, has taken lupus awareness a step further by writing both Sen. Diane Allen and N.J. Rep. Robert Andrews. Unfortunately, she’s never received a response.
But she’ll be out there with friends and family on a team to walk on May 20. As of mid-week, Shaw and her team had 27 registered walkers and nearly $1,500 raised.