Adult Success Story - Systemic Lupus
Meet Jackie Stollfus
Systemic Lupus is an autoimmune disease in which the body's immune system mistakenly attacks healthy tissue in many parts of the body. Here’s the story of Jackie Stollfus, a lupus patient who chose and adult stem cell transplant and was rewarded with a new life and a new family.
Jackie’s Gift to Herself
Spring Break and the living is, oh so fine.
At least that’s what Jackie Stollfus had in mind when she hit the beach at South Padre Island. But not long after the 21-year-old college student from Green Bay, Wisconsin arrived at the famous south Texas resort, something went wrong. Terribly wrong.
“All of a sudden my legs started swelling and I could barely walk,” recalls Jackie. “My ankles became little balloons and I couldn’t even bend them. I called my doctor and he ordered me to go to the hotel room, lie on the bed and elevate my feet. And I said, ‘I’m sorry, I will do that when I get home. I’m on spring break right now. I don’t have time to be sick.’”
Jackie returned home to confront the worst of her fears when she was diagnosed with Lupus, an autoimmune disease impacting more than 5 million people worldwide. There is no known cure, only treatment of symptoms with medication.
“Lupus is my body attacking my body,” explains Jackie. “If you have a cold, your body attacks the cold. My body attacks my kidneys. It doesn’t know the difference between a cold or my kidneys or my skin or my blood, it’s attacking it.”
Lupus symptoms vary in degree from one person to the next. “I really noticed it in the morning,” says Jackie. “I couldn’t squeeze the shampoo bottle and I couldn’t squeeze open anything. My hands were so weak, I couldn’t turn a key, I couldn’t open the car door. It’s like I couldn’t use my hands.”
A self-described eternal optimist, Jackie figured help was on the way. “I just feel, they’re going to give me a pill and I’m going to get better,” says Jackie. “Well, they give me a pill and it failed. They give me another pill and it failed. I went through every single medication they have. Nothing was working.”
“It’s frustrating, especially with Lupus, because no one has answers,” says Jackie’s husband Brian. “The doctors don’t have answers. I certainly didn’t have answers. You’re almost helpless. And it kind of sucks. I mean I know how I feel, but how helpless she feels.”
When all seemed lost, Jackie’s rheumatologist suggested she look into the work being done by Dr. Richard Burt at the Northwestern University School of Medicine in Chicago. Dr. Burt was gaining worldwide notoriety for his success using adult stem cell transplants to treat a variety of auto immune diseases like Lupus.
“It was kind of a last resort,” remembers Brian, “really, the end of the road. But we both decided to take that path and see where it took us.”
Things happened quickly. Within days Jackie was examined, screened and approved for the procedure that began with the harvesting of her own stem cells. That was followed by five days of intense chemotherapy designed to wipe out the “bad” while blood cells.
“After they wiped my body completely clean of all the sick cells, the Lupus cells, they gave me my own stem cells back,” says Jackie. “These cells are little baby cells. They don’t know that they have Lupus. So it’s a new, a brand new immune system. It’s an immune system of a newborn.”
It took more than six months, but finally, Jackie started feeling better. She regained her appetite and her strength, venturing out for short walks that turned into longer walks. Jackie and Brian moved to Texas where the warmer climate agreed with her.
Five years later, she’s better than ever, enjoying the outdoors with Brian while looking ahead to a long, happy life--and a family.
“Women with Lupus are usually not able to get pregnant and have a child,” says Jackie. But when I asked Dr. Burt about it he told me, ‘Jackie, you have a new immune system. Your body doesn’t know you have Lupus.’ “
There may be challenges ahead, but for Lupus survivor Jackie Stollfus, life is great. “I know I’m where I am today because of my adult stem cell transplant,” she says. “And I’m going to try and have that baby.”