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Rebecca in the Times and Democrat in Orangeburg, SC April 8,2008

'It was tough': Orangeburg woman's struggle with strange symptoms leads to Cushing's diagnosis; National Cushing's Awareness Day is April 8
By CANDACE NEWSON, T&D Features WriterTuesday, April 08, 2008

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As a dietician, Mississippi native and Orangeburg resident Rebecca Sibley was conscious of her food intake and caring properly for her body. So it was of great concern to her in 1986 when she began experiencing uncontrollable weight gain, among other symptoms.

"I had the moon face, the buffalo hump on the back of my neck, thin skin, I bruised real easily, and I had depression," Sibley said. "I knew something was wrong, being a dietician, but I just didn't know what was wrong. I knew I wasn't eating enough to be gaining the weight I was gaining."

Sibley took antidepressants for a year, which did not help, and continued to gain weight even though she was watching and counting every morsel she put in her mouth, she said. It was devastating for her as a dietitian to be gaining so much weight, and nothing she did made a difference in being able to lose the weight.

"It was tough because I was a dietician at the hospital, and I'm telling patients how to eat right, and here I am gaining all this weight," Sibley said.

She went to many doctors, who could not find what was wrong with her. Results were inconclusive, and Sibley said that only increased her emotional instability.

Taking matters into her own hands to find answers, Sibley took her doctor's advice and traveled to the Mayo Clinic in Rochester, Minn. According to the U.S. News and World Report of Best Hospitals, the Mayo Clinic is number one in helping diagnose people with endocrine problems.

Dr. John C. Morris III became Sibley's endocrinologist, diagnostician and friend. Since she had many symptoms that could be related to other diseases, Sibley had fine-tuned testing done. Not being a classic textbook case, Sibley had old photos of herself that proved to be the key to her diagnosis. Mayo made a slide of the pictures showing the progression of her disease, and that slide was used to teach medical students how photos can play a large role in piecing together the puzzle for diagnosing Cushing's disease.

Cushing's disease is a rare disorder of the endocrine system. The endocrine system consists of glands that produce hormones, which regulate processes throughout your body. These glands include the adrenal glands, pituitary gland, thyroid gland, parathyroid glands, pancreas, ovaries and testicles. The adrenal glands produce a number of hormones, including cortisol. Cortisol helps regulate blood pressure and keep the cardiovascular system functioning normally. It also helps the body respond to stress and regulates metabolism. However, when the level of cortisol is too high in the body, Cushing's disease may develop.

Cushing's disease was discovered by American physician, surgeon and endocrinologist Dr. Harvey Cushing (1869-1939) and reported by him in 1932. Cushing's birthday -- April 8 -- has been chosen as National Cushing's Awareness Day.

Cushing's disease is characterized by a variety of symptoms and physical abnormalities. These include weight gain; upper body obesity; round face, often referred to as a "moon face"; fat pads along the collar bone and on the back of the neck known as a buffalo hump; hyper pigmentation of the skin; severe fatigue and muscle weakness; excess sweating; bone loss; persistent hypertension; insulin resistance, which can lead to diabetes mellitus; depression; anxiety; backache; thin skin with easy bruising; and purplish-red stretch marks on the trunk, buttocks, arms, legs or breasts.

"Its very typical of a person to go for years with this disease and not know what was going on," Sibley said. "I went through a two-year process, which is a lot faster than what a lot of people get."

Although no tumor was seen on a CT scan of her adrenal glands or on a MRI of her pituitary gland, several weeks of specific testing including doing experimental testing pointed to a pituitary tumor. Sibley met with neurosurgeon Dr. Dudley H. Davis, who explained the risks of doing the exploratory transsphenoidal microsurgery, whereby the pituitary gland is accessed through the upper lip and nasal passages.

Sibley had her first transsphenoidal microsurgery on May 4, 1988, and a 4-millimeter tumor was removed. Soon after surgery, she started losing weight, and her depression ceased.

Sibley fell into the 10 to 20 percent of patients that experience a recurrence of tumors, and a second pituitary tumor the size of a BB was removed on Jan. 13, 1994.

The most difficult part of dealing with her diagnosis was the effect it had on her as a mother and wife, Sibley said.

"It was tough, particularly for my two children, more so for me as a mother for my children not being the best mother I could be," she said. "They understood what their mother was going through and were very supportive."

Sibley still managed to attended all of her children's extracurricular activities, even though she said she "let the house go." Her son, John Paul, and daughter, Jennifer, are graduates of Orangeburg-Wilkinson High School.

Sibley's husband, Daniel, said 50 hours of counseling training he received around the time of his wife's diagnosis was a great help in getting him through some of the problems they were having.

"I think a lot of our strength came from our faith and commitment to one another," Daniel Sibley said. "I've seen my role as just helping to support her. I've tried to support my wife. We've been blessed that we've gone through this together."

Daniel Sibley said he's blessed

to have his wife and believes her background as a dietician and her family background (her father was scientist, and her mother was educator) helped her through, as well as her faith in knowing that no matter what comes her way, God is in control.

As a result of keeping a journal every night of the progression of her life with Cushing's disease, Rebecca Sibley has written a book, "Through It All God Reigns" (www.throughitallgodreigns.com). The first edition was penned in 1988, and, following her second tumor, she wrote volume two in 1994.

Sibley said her book has gone across the world to help others struggling with this and other illnesses and has been included in Cushing's disease support group newsletters and located in several libraries and bookstores. Sibley said it's a privilege to have the opportunity to counsel others on Cushing's and make the community aware of the disease.

T&D Features Writer Candace Newson can be reached by e-mail at cnewson@timesanddemocrat.com or by telephone at 803-533-5540. Discuss this and other stories online at TheTandD.com.
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The following comments are reader submitted. They do not represent the views of The T&D or Lee Enterprises.

jp wrote on Apr 8, 2008 10:10 AM:
" Rebecca's website is http://www.throughitallgodreigns.com "

Rebecca in Post-Bulletin in Rochester, MN

Health
'Friendly' Rochester aids patient's recovery
5/12/2008 8:39:19 AM
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By Jeff Hansel
Post-Bulletin, Rochester MN

Rebecca Sibley only lives in Rochester a few days a year.

She considers it almost a second home. "We have found friends. We go to Trinity Presbyterian Church in Rochester," she said.

She comes to Rochester for medical care, like thousands of other temporary residents from across the country who stay in Rochester a day, a week or, sometimes, many months.

The first few times Sibley came to Rochester, she seemed to always meet someone with symptoms similar to her own.

Sibley, now of Orangeburg, S.C., had become overpowered by depression that changed her once joy-filled life in Mississippi.

Getting a diagnosis took a long time. But she finally learned she had Cushing's syndrome, an illness caused by excessive cortisol hormone in the blood, according to cushings-help.com.

Sibley's illness was caused by a tumor on her pituitary gland.

"Just my faith and the Lord has seen me through everything. It hasn't been an easy road. But I feel like God has helped me through each hoop. And, with that, I feel like God has used me to help other people," Sibley said.

In 1986, she noticed weight gain, sleep loss and a sudden personality change. Her life spiraled downward. She recorded 35 symptoms in a journal she kept to monitor patterns in her illness.

The symptoms included low self-esteem, decreased appetite, constant weight gain, decreased sex drive, uncontrolled irritability, crying and slowed memory. As a registered dietitian, the weight gain embarrassed Sibley when she went to work back home. Some coworkers asked why she was letting herself go, and she worried about what patients thought.

"I monitored my caloric intake and knew that I was consuming fewer calories than was nutritionally safe," she wrote. Yet the weight gain continued.

Tests for a chemical imbalance suggested she had a tumor.

That led Sibley and her husband to Minnesota and what, at the time, was Connolly's Downtown Motel in Rochester. Today, Sibley estimates she's been to Rochester 25 times or more and she expects to continue receiving treatment here.

She wants to raise awareness of Cushing's syndrome. But she also wants the people of Rochester to know the part they play in the recovery for the thousands of patients who call Rochester home for brief periods of their lives.

"That's the thing about Rochester, is it is such a friendly town for the stranger to come into," she said.

The test she took at Mayo Clinic was experimental. Today, it's standard protocol.

She had a tumor removed and her weight quickly began to drop. Her symptoms returned, but removal of a second tumor left her feeling herself again.

Sibley takes growth hormones, the kind baseball stars have been accused of taking illegally.

"I think the hardest thing for people when they can't find an answer is not having a name put on something when you know something is wrong," Sibley said.

Web links

* Cushings Help and Support
* Cushings Support and Research Foundation

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