A diagnosis to end the despair

[~MaryO~]

http://www.oregonlive.com/living/oregonian...1020.xml&coll=7

A diagnosis to end the despair

Wellness: Finally learning they have Cushing's brings a sense of relief

 

Wednesday, July 05, 2006

KATE TAYLOR

The Oregonian

 

They've spent years, they say, chasing misdiagnoses. "You eat too much pizza," said some doctors. "It's fibromyalgia," said others. "Lupus, thyroid disorder, menopause," said still more doctors.

 

It was only when they found Dr. William Ludlam at Oregon Health & Science University that they were diagnosed with Cushing's disease, which causes uncontrollable weight gain. And it wasn't until they found each other that they felt anyone else really understood their frustration and despair.

 

"I tear up just thinking about how complete and validated I felt when I met them. We're like family now," said Jaimie Augustine, 22, of San Diego, sitting recently in a hospital room with Ludlam and two other Cushing's patients, Karen Nolan of Vermont and Lisa Eldridge of Massachusetts.

 

Reaching a hand toward Nolan, Augustine said, "I call her 'Karen, my Cushy mom.' She understands things that I can't even talk to my own mother about."

 

Like the nightmare of turning into someone she didn't recognize in the mirror. Or the strict dieting and strenuous exercise that did nothing to stop the weight gain. Or the helpless anger at so many fruitless medical appointments.

 

As director of the OHSU Pituitary Unit, one of the largest neuroendocrine centers in the country, Ludlam says he's glad to see Cushing's patients bonding. He is working hard to diagnose and spread awareness about the rare disease, which is caused by a tumor in the brain's pituitary gland.

 

Ludlam guides about 30 patients a year through surgery. Because it's difficult for surgeons to siphon the pituitary tumor -- "it's like a puddle," he says -- patients sometimes have to go through surgery more than once.

 

Only 600 patients nationwide are diagnosed each year with the disease, but doctors like Ludlam suspect that many others go undiagnosed.

 

Besides wild weight gain, symptoms of Cushing's include rounded, puffy facial features, increased fat around the neck, fragile and ruddy skin, unusual hair growth and thinning or balding scalps.

 

They are symptoms that the three friends say they fought for years.

 

As Augustine's weight rocketed from 120 to 220 after she turned 14, she went on low-calorie diets and upped her workouts to 11/2 hours a day. When she continued to expand, she stopped dating and taking part in social activities.

 

"I was continuing to balloon into a person I no longer recognized," she said. "I knew something was seriously wrong, and I could not keep beating myself up over what I was or wasn't putting in my mouth."

 

The friends found each other by entering phrases such as "uncontrollable weight gain" on their computer search engines, they said.

 

On Cushings-help.com -- a Web site the three describe as "lifesaving" -- they found one another. As they read each other's stories, waves of relief washed over them. "I really thought," Augustine said, "that I was the only one."

 

Many doctors, Ludlam said, don't have the expertise to recognize Cushing's.

 

"There are two issues. One is that the general practitioner doesn't see the disease very often and won't think of it when a person has it right there in front of them," he said. "The other problem is that it's complex, so a doctor might not give the diagnosis because one piece of the work-up doesn't fit."

 

One of the most problematic aspects of Cushing's, Ludlam said, is that it drains away patients' energy even as they try to seek help.

 

For Nolan, 55, Cushing's came with a weakness and shakiness that made even a trip up the stairs or a short drive to the store dicey.

 

"The fatigue was odd," she said. "I'd be driving and suddenly have to open up all the windows because I was afraid I was going to fall asleep."

 

The onset of Nolan's disease began sometime in 1999, when her weight shot from 128 to 206 and she lost nearly all her hair. As doctors guessed everything from menopause to depression, the former office manager grew ever larger, ever more frightened.

 

"The darkest moment was when one doctor told me I'd better just get used to being heavy and bald," she said. "I remember driving home and crying the whole way."

 

Nolan, who had surgery in January, is anticipating the kind of weight loss experienced by her "Cushing's family." Augustine, whose surgery was in November 2005, has lost 20 pounds; Eldridge's surgery was in April 2005, and she has lost 50 pounds.

 

As more and more people are diagnosed, the three patients are working to help spread awareness about Cushing's. And, they say, they hope to be able to support many other patients who have to go through the same ordeal.

 

"You can't believe how much it helps to have friends," Augustine said. "When one of us can't see the light at the end of the tunnel, the others can help us get through."

 

Kate Taylor: 503-294-5116; katetaylor@news.oregonian.com

[kathyz]

Thanks for posting this MaryO. I have been getting calls from friends here in Portalnd asking me if I saw the article. It was a very prominant piece begining on the front page of the Living Section of the Oregonian. The article also contained an information insert listing most of the major symptoms of Cushings.

 

I think our friends did a really nice job. It not only is helpful for any Cusings patients but potential patients also. It also educates the people of Orgeon on another area of great work being done a Oregon.

 

Thank you Karen, Jamie and Lisa. A thank you also to Dr. Ludlam for taking the time to explain Cushings to the press.

 

Kathy Z

[ikho1967]

Aw, thanks Kathy... And thanks MaryO for posting this. The site truly is a lifesaver and I see a few newbies have already found us thanks to the article. For those that may not know, I'm Lisa Eldridge in the article, Karen is roon here on the board and Jaimie, is well, our adorable Jaimie...

[rooon55]

Awwwwww Shucks ,

 

Thanks Kathy and Mary O

 

 

Karen