Nurse has had 43 surgeries in battle against rare disease

Pam Schiff
Posted 11/4/14

“Funny, you don’t look sick,” are words that Barbara Croker has heard over and over again during the past 15 years.

Croker was diagnosed in 1999 with Dercum’s disease. Also known as …

This item is available in full to subscribers.

Please log in to continue

E-mail
Password
Log in

Nurse has had 43 surgeries in battle against rare disease

Posted

“Funny, you don’t look sick,” are words that Barbara Croker has heard over and over again during the past 15 years.

Croker was diagnosed in 1999 with Dercum’s disease. Also known as adiposis dolorosa, Anders’ syndrome and Dercum-Vitaut syndrome, it is a rare condition that is characterized by benign but painful fatty tumors that occur chiefly in post-menopausal, obese women of middle age.

Although it is 20 times more common in women, 16 percent of the reported cases are males, and the disease can also occur in people who are not obese.

Born in Warwick, Croker attended Holliman Elementary School and Aldrich Junior High, and graduated from Toll Gate High School in 1984. She received her degree in nursing from the Community College of Rhode Island. Her family previously owned the Harp & Shamrock Pub.

Croker’s first symptoms appeared in 1996, when she woke up one morning and was unable to walk on her heel. As a nurse, she walks all the time for work, so she spent lots of time limping. Once she had an X-ray on her foot, it showed a stress fracture in her heel.

“They put me in a cast in December,” she said. “They thought it could possibly be sarcoma.”

She was in a cast and used crutches for four weeks, with no relief.

Because the problem was a fatty tissue tumor, it would not show up on X-rays or scans. The tumor had destroyed the bone itself, and Croker had to have a bone implant.

“I now have a bone made out of cement. The tumor cannot eat or destroy it,” she said.

The tumors have traveled up her legs, and are now all over her body. She has had 43 surgeries in 18 years.

“They have taken three tumors out of my stomach. One of them weighed over 20 pounds. It looked like I was nine months pregnant,” she said.

Croker also has stage-two kidney disease, and had part of her collarbone removed, one rib taken out and a plate inserted in her neck with screws.

She takes 22 different medications a day, and has recently started using medical marijuana to help with muscle relaxing.

“I have to weigh the options of taking all theses pills versus how bad the symptoms are,” she said.

The muscles in her body are deteriorating. Because Dercum’s is a progressive disease, there are many factors that can cause a flare-up, such as the weather or stress.

“When it is very cold, my muscles restrict and my fingers lock. When it is hot, my blood pressure goes up,” she said.

The tumors actually grow into the muscles and nerves.

“It feels like my body is being attacked by bees from the inside when a tumor grows,” she said.

At the time of her diagnosis, there was no research doctor in Rhode Island familiar with the disorder.

“In 2003 I went to London to see Dr. Ian Tomlison. He said he had never seen a case like mine,” she said.

With no diagnosis in the U.S., she was passed from doctor to doctor.

“I had to do my research, be my own advocate. I would sit and cry,” she said. “My savior was my Mum. She was my rock.”

Croker admits to feelings of anger, sadness and bitterness.

“I had the ‘Why me?’ moments – ‘I’m useless,’ ‘I can’t work’ – but I keep going. I want to raise as much awareness of Dercum’s as I can,” she said.

Croker worked as a nurse at several medical facilities.

“I liked my job, I was good at it. I don’t want to feel like a burden to my family or friends,” she said.

When Croker had to stop working, her two children had to adjust to a different mom.

“They lost their active, fun mom. We used to go skiing, hiking, lots of time outdoors,” she said.

The children were young when she was diagnosed, around 6 and 7 years old.

“They didn’t understand what was wrong. This changed their lives,” she said. “I know it is and was not fair to them. They know when you are sick, you get better. Why wasn’t I getting better?”

The pain Croker and other Dercum’s patients have is chronic and progressive. She has learned how to live with it but never knows what will make her exhausted and deplete her small energy reserve.

There is an actual genetic marker that identifies Dercum’s as an autoimmune disease.

“It can be fatal if it attacks the heart and brain,” Croker said. “There is no real cure or treatment. You treat the symptoms to try to be comfortable.”

In an effort to raise awareness about Dercum’s and money for research, Croker and her family established the RI Dercum’s Research Fund Inc. In 2008, they held their first golf tournament and raised about $2,000. This year was the fifth tournament, and they raised close to $10,000.

“I work closely with the whole association, which is run by president John O’Conner, vice president Ben Perra, treasurer Jim Greene, secretary Lauren Beirne and the dedicated committee members Helen Fay, Kevin Conway and my brother, Pete Lyons,” Croker said. “All the money we raise goes directly to Tucson, Ariz., and to the research that is being conducted by Dr. Karen Herbst.”

The organization holds events throughout the year, such as a guest bartender night, Garlic and Gaelic night, which features traditional Irish music served with a pasta dinner, and a new event this year, a motorcycle run.

“We are the only 501(c)(3) in the country for Dercum’s,” Croker said.

Herbst is the endocrinologist that actually found the gene for Dercum’s through gene mapping. Her research has shown the lymphatic system leaks.

Croker sees Herbst as her personal angel.

“I can call her at any time and she is always there for me,” she said.

Herbst’s work is instrumental to Croker’s goal of finding a cure.

Herbst is trained and experienced in dealing with and examining fat. She has published many papers on the subject, and is considered the go-to authority on the topic of Dercum’s.

“Dercum’s is a tough disease to live with. I wake up every morning and wonder, ‘OK, is this the morning I am not going to be able to walk or use my hands?’ Or, ‘What will show up on my body today, more lumps, facial rashes, skin rashes, my skin rupturing open for no reason?’ I have great support from my family and friends, thank God. It’s not easy for them to watch me in pain. I am thankful to have them all in my life,” Croker said.

National Dercum’s Awareness Day is April 4. For more information about Dercum’s disease, visit www.rarediseases.org. To learn more about the Decrum’s Research Fund, check out the organization’s Facebook page.

Comments

No comments on this item Please log in to comment by clicking here