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Lorrie's Newspaper Story...

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Lorrie Ines, of Suisun City, poses with her two children, Ashley, left, and Brian. Ines has battled Cushing's Disease for five years. (Photo by Mike McCoy)

Woman battles rare disorder

By Jay Howser

SUISUN CITY -- A tiny tumor quietly developed in the base of her brain, and it was quite some time before Lorrie Ines realized something was very wrong with her body.

In 1998 the Suisun City resident started "gaining weight like crazy for no apparent reason," she said, and by the end of the year it started to alarm her. Eventually she experienced several other ailments, including depression, terrible pain in the muscles and joints, weariness, acne, accelerated heartbeat, high blood pressure, loss of hair on the top of her head and growth of hair on her face.

Ines suffered from Cushing's Disease, a disorder caused by prolonged exposure to high levels of the hormone cortisol. The disease is very rare, and Ines' form of the disease afflicts about one out of every 100,000 people.

But Ines didn't know any of this at the time. Her symptoms didn't manifest themselves all at once, and she attributed the weight gain to her high-stress job as a registered nurse, and the weariness to her weight gain.

Ines knew she would have to see a doctor in early 1999 when she attended one of her daughter's softball games and found herself unable to get up from her folding chair.

"It was very embarrassing, but it was because I was so weak in my legs. I just thought it was because I was so heavy," she said.

Another time she danced a few songs at a work function of her husband's, and a few hours later her joints hurt very badly, and then it got worse.

"In the middle of the night I woke up and I was in excruciating pain," she said. "I knew there was something definitely wrong."

After researching her symptoms, Ines suspected she might have Cushing's disease. Her physician, who had never had a Cushing's patient before, agreed and gave the diagnosis.

Ines learned that a gelatinous tumor 6 millimeters in length grew into her pituitary gland, prompting her adrenal glands to produce excessive amounts of cortisol. This caused her obesity - Ines gained 80 pounds in about a year and a half - and the other symptoms.

In September 1999 Ines underwent surgery to have the tumor removed. The surgery appeared to be a success, but Ines suffered greatly during the next six weeks as her body reacted to the lower levels of cortisol.

"I bottomed out. I was like a junkie going cold turkey," she said.

Her hands shook, she couldn't sit still and she cried inexplicably for hours at a time. Doctors told her she would be fine after the surgery, and when she wasn't it scared her, she said.

"I thought I was going crazy. I thought that on top of all this I was going to be committed to a mental hospital," she said.

Her symptoms lessened gradually until December 2000, when she was off replacement steroids, biking with her children and feeling good about herself.

Two months later, it all started again - the weight gain, the depression, the fatigue and everything else.

Ines got the bad news that surgeons failed to remove all of the tumor the first time, and scar tissue prevented any successful attempts in the future. Instead, doctors chose a different tactic and removed Ines' adrenal glands.

Now Ines takes pharmaceuticals twice a day to replace the cortisol and maintain her body's fluid-sodium balance, jobs her adrenal glands formerly performed. The tumor is still in her brain, leaving her at risk for ailments such as Nelson's syndrome if it continues to grow, but doctors monitor it every six months with magnetic resonance imaging.

Things could have turned out much worse for Ines. She was lucky to have a doctor who immediately gave the proper diagnosis, and her own training as a nurse in case management helped her cut through a lot of red tape to get proper treatment.

"I had so many advantages," she said. "I knew exactly what to do because I do it for a living. . . . I absolutely knew my rights, and I knew how to get things moving."

Ines was also lucky to live in 2002 instead of 1902. Women with Cushing's Disease used to be the bearded ladies at the circus, said Mary O'Connor, a Virginia resident who also survived the disease and later founded a Web site dedicated to educating about the disease.

"Dr. Cushing only discovered it in 1932," O'Connor said. "Before that (patients) were just put in mental hospitals or they joined the circus to get a job, which is pretty scary. . . . I'm glad I wasn't born in the 1800s. It's scary to even think about."

About 650 people actively post on the message boards on O'Connor's Web site, many diagnosed with Cushing's and some fearing they have the disease. The site offers a way for them to educate and support each other, O'Connor said.

"Most Cushing's people never met another Cushing's patient," she said. "That's all changing now because we can have conventions, local meetings and a phone support group where we can call each other and chat."

Ines benefited greatly from the support network she found, and she even met a woman in Riverside who was a mother and had gone through many of the same experiences Ines had.

She also got lots of help from her family, she said.

"I think it brought my family closer together. It showed me that I can count on my husband when I'm in trouble," she said. "I thought it taught the kids that sometimes life can be difficult, but families can get through it together."

For more information about Cushing's Disease and Cushing's Syndrome, visit www.cushings-help.com.

Jay Howser can be reached at jhowser@dailyrepublic.net.
Read Article: Coping: Cushing's and Children
Read Lorrie's newspaper article
Read Lorrie's bio