And It's About Time There Was Some Support For Cushing's!
From http://abclocal.go.com/kfsn/story?section=health&id=4663369
October 18, 2006 - Imagine exercising everyday, eating very little and still gaining weight. That's what happens to hundreds of people with a rare metabolic disorder that often goes undiagnosed for years. But there is hope and help.
As a young teen, 22-year-old Jaimie Augustine weighed 130 pounds. She started gaining weight at 15. At 22 she weighed 220. "I was at the gym every day for an hour and a half; I was consuming 1,000 calories or less a day," she says.
Augustine also had insomnia, excess hair growth, severe acne, depression and stopped menstruating. But it took five years before she found a doctor who recognized the symptoms of this mystery disease.
"I felt validation because I had friends and family that didn't believe me," Augustine says. "They're just thinking, 'Oh, you're sneaking Oreos at night"
"Virtually all the symptoms and physical features of Cushing's can be associated with other diseases -- and diseases that are more common than Cushing's," William Ludlam, M.D., Ph.D., an endocrinologist at Oregon Health and Science University in Portland, tells Ivanhoe.
Cushing is caused by a tumor in the pituitary gland that imbalances your hormones. Glands on the kidneys then release too much of the hormone cortisol. "So despite what you do, your metabolism has been hijacked by too much of a hormone that you actually need to live," Dr. Ludlam says.
No one knows exactly how many people have Cushing's disease because it often goes undiagnosed. But about 1,000 people are told they have it each year in the United States. The first step in diagnosing it is to find an experienced endocrinologist -- the diagnosis can then be confirmed through blood and urine tests.
Some centers treat it through drugs and radiation, and surgery can remove the tumor, with the greatest chance for a cure in the hands of an experienced neurosurgeon.
Augustine's first surgery didn't work, so last fall she had a second procedure. It worked, and she's already lost 40 pounds.
If you would like more information, please contact:
http://www.cushings-help.com
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September 21, 2006
Imagine exercising everyday, eating very little and still gaining weight.
That's what happens to hundreds of people with a rare metabolic disorder that often goes undiagnosed for years.
There is hope and help.
Obese from Secret Disease
As a young teen, Jaimie Augustine weighed 130 pounds. She started gaining weight at 15. At 22 she weighed 220.
"I was at the gym every day for an hour and a half; I was consuming 1,000 calories or less a day," says Jaimie.
Jaimie also had insomnia, excess hair growth, severe acne, depression and stopped menstruating. But it took five years before she found a doctor who recognized the symptoms of this mystery disease.
"I felt validation because I had friends and family that didn't believe me. They're just thinking, 'Oh, you're sneaking Oreos at night,'" she says.
Jaimie was diagnosed with Cushing's disease.
"Virtually all the symptoms and physical features of Cushing's can be associated with other diseases -- and diseases that are more common than Cushing's," says Dr. William Ludlam, and endocrinologist at Oregon Health and Science University in Portland, Oregon.
It's caused by a tumor in the pituitary gland that imbalances your hormones. Glands on the kidneys then release too much of the hormone cortisol.
"So despite what you do, your metabolism has been hijacked by too much of a hormone that you actually need to live," says Dr. Ludlam.
Surgery like this can remove the tumor -- with the greatest chance for a cure in the hands of an experienced neurosurgeon. Jaimie's first surgery didn't work, so last fall she had a second procedure. It worked. She's already lost 40 pounds.
"Now I have my life back," says Jaimie.
And she has a future she can look forward to instead of dread.
No one knows exactly how many people have cushing's disease because it often goes undiagnosed.
But about one-thousand people are told they have it each year in the U.S.
The first step in diagnosing it is to find an experienced endocrinologist -- the diagnosis can then be confirmed through blood and urine tests.
Some centers also treat it through drugs and radiation.
Log on to www.ivanhoe.com for more information.
Watch the latest Medical Breakthrough every Monday, Wednesday and Friday on NewsChannel 8 at 5 and every Monday and Wednesday on NewsChannel 8 at 10.
http://www.nbc10.com/health/9860306/detail.html NBC10.com
POSTED: 4:58 pm EDT September 15, 2006
On the HealthWatch: frustrating symptoms that change the way you look. It could be what some doctors call "the secret disease".
It's a mystery disease. Imagine exercising everyday, eating very little and still gaining weight.
That's what happens to hundreds of people with a rare metabolic disorder that often goes undiagnosed for years.
The good news is there's hope and help.
As a young teen, Jamie Augustine weighed 130 pounds. She started gaining weight at 15 and at 22 she weighed 220 pounds.
Jamie also had insomnia, excess hair growth, severe acne, depression and stopped menstruating.
But it took five years before she found a doctor who recognized the symptoms of this mystery disease.
Jaimie was diagnosed with Cushing's disease. It's caused by a tumor in the pituitary gland that imbalances your hormones.
Glands on the kidneys then release too much of the hormone cortisol. Surgery like this can remove the tumor.
The greatest chance for a cure is in the hands of an experienced neurosurgeon.
Jamie's first surgery didn't work so last fall she had a second procedure. It worked.
She's already lost 40 pounds.
And she has a future she can look forward to instead of dread.
No one knows exactly how many people have Cushing's disease because it often goes undiagnosed.
But about 1,000 people in the U.S. are told each year they have it. Diagnosis can be confirmed through blood and urine tests.
It is sometimes treated with drugs and radiation.
Copyright 2006 by NBC10.com. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
From http://www.49abcnews.com/news/2006/jul/22/surgery_could_cure_rare_cushings_disease/
Story by Jessica Lovell (Contact)
9:15 p.m. Saturday, July 22, 2006
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Cushing's disease brought four women together for what they fondly refer to as their “Cushie Party.”
“I don’t know about you guys, but my family didn’t even believe me,” Jaimie Augustine***, Cushing's patient, said. “You don’t gain 70 pounds in 7 months and have something not be wrong.”
Cushing's disease is caused by a rare tumor in the pituitary gland. The tumor itself is not the problem, but it causes the body to produce too much of the hormone cortisol. It’s the excess cortisol that wreaks havoc on the body.
“I started having hair growth on my chin, and on my arms,” Augustine said. “I got purple stretch marks on my stomach.”
It didn’t matter if Augustine ate as little as a thousand calories a day, she still gained 100 pounds.
It took five years before Jaimie’s doctors pieced together her symptoms and treated her for Cushing's.
“Most centers that deal with this would accept that the first line of treatment is pituitary surgery, brain surgery,” Dr. William Ludlam, endocrinologist, said.
During surgery, doctors remove the tumor on the pituitary gland.
“It’s still actually a difficult surgery, because these tumors are typically very liquidy, soft tumors and can ooze and go places,” Dr. Ludlam said.
Augustine’s surgery was a success, and she began to lose weight after doctors removed the tumor. While Augustine said she can’t wait to have her body back, she admitted Cushing's gave her a different perspective on life.
More Information
Dr. Ludlam cautions that pituitary surgery works dramatically for some patients, but not for all. If you have Cushing's, or think you have symptoms, you can find out more information on the disease, or find support near you.
*** Message Board Members. The person sitting next to Jaimie against the head board is Kristin (lookingforanswers), Amy (kalimae) is the blonde and the one in the yellow top is Krystine.
