Student struggles with rare illness

Amanda Kreeb, junior in AHS, jumps on a trampoline at in her backyard in Champaign on Saturday. Laura Prusik

Amanda Kreeb, junior in AHS, jumps on a trampoline at in her backyard in Champaign on Saturday. Laura Prusik

By Brittany Abeijon

On the outside, optimism exudes from every pore of her body, and sweetness sparkles in her clear-blue eyes, but on the inside, Amanda Kreeb leads a secret, sad life.

In May 2003, Kreeb, a 29-year-old junior in AHS studying community health, was diagnosed with Dercum’s Disease, a chronic condition marked by painful fatty tumors, fatigue and various mental disturbances. Little is known about this affliction and the disease does not respond to any modern method of treatment.

Although Kreeb suffered through surgeries and recoveries, she is determined to learn more about the disease as she continues to fight for the sake of others struck by Dercum’s.

Before she was sick, Kreeb enlisted in the U.S. Navy and thought she was completely healthy and in control of her health and body.

“A woman’s worst nightmare” was about to become reality. Kreeb gained 20 pounds in one month and her entire body swelled. None of her clothes fit and she said she felt depressed, ugly and alone.

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“Pain was radiating all over my body,” she said. “If I pushed hard on my stomach, I could feel a lump.”

The lumps were invisible to CT scans and MRIs because the tumors grew in her fat cells. One doctor told Kreeb the illness was psychological.

“I felt nothing short of rage. I wanted to hit the guy,” Kreeb said. “I felt at a total loss and I cried all the way home.”

Although she looked incredibly healthy, Kreeb said she felt miserable.

“I would wake up, go to my couch, put myself face down and cry for about an hour every day,” she said.

She visited Dr. Susan Otero, a plastic surgeon in Washington D.C., and told her, “Cut my stomach open and just look inside. If nothing is there, then that’s fine. But if something is wrong, wake me up.”

Otero woke Kreeb up during surgery, holding two small tumors in her hand. A young person full of future aspirations, she had a sudden change of plans and was forced to quit her job.

Newfound optimism, responsibility

Kreeb conducted her own research and eventually diagnosed herself with Dercum’s Disease. She brought her research to her doctor, who agreed with the diagnosis.

Tumors had spread over the lower right section of her body – 32 total. Doctors proposed an expensive and painful treatment surgery called liposeletion in which a laser emulsifies fatty tissue and then sucks fat out, but there were no guarantees the method could eliminate the tumors.

Her first surgery was performed one month before her marriage. Amanda and Matt Kreeb wed on Nov. 26, 2003, and the following months were far from a blissful honeymoon.

“(The surgery) was the most horrifying experience ever, and I’ve seen war,” Kreeb said. “I couldn’t take a shower. I couldn’t tie my own shoes. I had to wear a compression garment and if I took it off, I would pass out. Matt had to rub smelling salts under my nose in the shower to keep me from passing out.”

Still, both Amanda and Matt are glad to have gone through the ordeal together so early in their marriage.

“It showed true love, and it really showed we wanted to be married,” Amanda said. “He is the most amazing man I’ve ever met in my life.”

After her recovery, the couple had newfound optimism. Matt and Amanda vowed to pack a lifetime of activity into whatever time remained and traveled to Peru to volunteer at an orphanage.

“That orphanage was worse than any situation we’d been in. Kids were clinging to us, wanting hugs, kisses and homes,” Amanda said. “The best thing to do to get your mind off your own problems is to help out others with theirs.”

The orphanage was one of the most significant places for her emotional healing, but lingering symptoms affected her physical status.

“If I stressed, my health would go downhill. If I gained weight, tumors would grow,” Kreeb said. “I would eat when I was in pain, but then I’d gain weight rapidly, causing more pain. It’s a cycle you get trapped into.”

Kreeb talked about killing herself and would often say, “If I can die right now, I would be OK with that.”

When Amanda and Matt married, he was only 20 years old, but Amanda’s six surgeries within a year forced him to grow up quickly.

“It made me learn what it is to be a man, both monetary-wise and emotional-wise. I was responsible for providing for my family now,” Matt said.

In 2004, after being discharged from the Army, Matt underwent surgery on both his knees. He is now in a wheelchair part time.

“We understood chronic pain,” he said. “We had remarkable early marriage years that made us incredibly close – real-life close, not honeymoon close,” Matt said.

Amanda said her husband’s love was the best stress and pain reliever.

“I would try and laugh my way through (surgery), but it was a nightmare,” she said, as her eyes filled with tears until one rolled slowly down her dimpled cheek. “Matt would entertain me by dancing around the room and I never recovered so fast in my entire life.”

Despite Matt’s efforts, she secretly felt depressed. Only her mother and husband glimpsed the gloomy side. Matt did his best to keep his wife’s mind off her poor spirits, but it was Amanda’s mother who managed to break through.

“It’s not that her husband isn’t a compassionate, loving man, but sometimes you just need your mom to talk to,” said Roz Wirtz, Amanda’s mother. “Your mom listens to you differently than other people do.”

Having to see her daughter in pain and not being able to do much for her was the hardest thing for Wirtz to deal with, but she said Amanda has become a stronger woman.

“When you look at her and see a young, beautiful, vibrant woman, you don’t see the pain behind her. That is what makes it so difficult to grasp,” Wirtz said.

A reluctant inspiration

Kreeb started researching alternative medicines and went through more than $2,000 in supplements, most of which did not alleviate her pain and left her feeling hopeless. Soon after, Amanda experienced a spiritual transformation.

“The Bible says God is constantly trying to get our attention and he got mine,” Amanda said.

Another turning point came when Amanda discovered Qi-gong, an ancient form of Chinese exercise, and e-mailed Weimo Zhu, professor in kinesiology and community health, who teaches Qi-gong classes and workshops at the University.

“I told him ‘I don’t have money or time, but I’m really sick and really scared, and I want to learn how to do this,'” she said.

Although Zhu had not heard of Dercum’s Disease before, he began researching Chinese literature and found documented cases where Qi-gong helped people with “fat tumors” and symptoms similar to Amanda’s.

Zhu did a case study on Amanda while he followed her progress for six months, actively tracking her pain and fatigue on a unique scale which he devised. Amanda assisted with detailing the study based on her own observations and opinions. The study is being published.

“Amanda moved from patient to student and researcher,” Zhu said. “She is using her own experience to heal herself.”

Within a month of practicing Qi-gong, Amanda’s stress and anxiety decreased even though her lifestyle wasn’t changing. She began losing weight and became very aware of her body.

“I think she will beat the disease,” Zhu said. “Her quality of life will not be bothered by it.”

Zhu hopes to conduct further research on more people with Dercum’s Disease, with Amanda as an active researcher and teacher to the group.

“It means more to patients if she promotes wellness because she has the disease,” Zhu said. “Her story is an interesting one, but it’s not over yet.”

For now, she is still reluctant to share her story.

“People are attracted to people with enthusiasm and optimism, and when I’m sick and struggling I want to hide it,” Kreeb said. “I would love for the world to understand, but it’s too much effort.”

Kreeb fears what she would have become without the experience and has no regrets.

“I didn’t believe in marriage, didn’t trust men, didn’t help other people,” she recalled. “But now I realize (marriage) can be functional and beautiful. There is a bigger agenda here.”

Given her history of relapses, Kreeb is taking life one day at a time.

“I try not to have too many expectations, and my goal is to respond to where God leads me,” she said. “Healing in my life and others is what matters now; my career is not so important. Only the way that I love and connect with people makes my life meaningful.”

Apart from studying medicine, she has advice for others to improve the world through their outlook.

“Do nice things right now and tell people you love them every chance you get,” Kreeb said. “People don’t regret things they did; it’s what they didn’t do. Adopt a bus load of kids, lead people on mission trips, practice Qi-gong or work with Alzheimer’s patients. It’s all beautiful.”