Over 10 Years of Support For Cushing's Patients!
• Cushing's Disease: Fighting back to fitness Bristol (UK) Evening Post, May 29, 2010
• Erella Ganon. Neighbourhood Stories is a documentary series profiling interesting people who live and work in Toronto’s distinct neighborhoods. It was created by a some very talented people for Rogers TV in Toronto and broadcast April 2010.
• Jackie, Medical Mystery: 11th Doctor Sees Ghost, added March 7, 2009
• Joselle, Diagnosis of rare disease brings area woman hope February 22, 2009
EyeRishGrl August 20, 2008
When Colleen gained 80 pounds in a short period of time, suffered with severe acne, and multiple other symptoms of Cushing's Disease, she had no clue what was wrong. After her dad saw a story on a local news channel and told her about it, she saw a docter at the University of Pennsylvania who diagnosed her with the same disease. To see Colleen's story, watch the following video, and listen as her doctor talks about the morbidity of the disease
Carrin Ketchum, Baxter Springs, is undergoing delicate neurosurgery today at Swedish Medical Center in Seattle.
If successful, the operation — to remove a tumor on her pituitary gland — will cure a condition that went undiagosed for 13 years.
She suffers from Cushing's Syndrome, which is considered to be a rare disease because only 10 people per million are diagnosed with it.
Kate (Fairley on the boards) and her doctor Dr. Ted Friedman, were featured on the National Geographic channel. The show, called the Science of Obesity, has a segment on Cushing's syndrome.
Today, 127 million adult Americans are considered overweight, but few reach the extreme proportions of the exceptionally obese. What are the physical stresses of weighing more than 500 pounds and what steps can reverse it? NGC provides an understanding of what happens inside the bodies of these massive people & why a person can pack on hundreds more pounds than those with typical weight challenges. The show explores the genetics behind weight gain & medical advances available to help prevent it.
I hope that all of you can watch this. Please consider contacting your local media about doing your story! There is still much work to do to increase Cushing's awareness.
Robin submitted the Cushing's segment for us...
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...
A doctor didn't advise Vermont's Karen Nolan*** (Rooon on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing's disease - another Cushing's patient did. After reading Nolan's post on an Internet message board, another patient suggested Nolan's lab results and symptoms could indicate pituitary disease and that help might be found more that 3,000 miles away at Oregon Health & Science University.
"She sent me a link to the Cushings Help Organization, Inc. Web site (www.cushings-help.com) a patient-created and maintained site, and suggested an Oregon doctor known for solving difficult cases," said Nolan. That doctor is William Ludlam, M.D., Ph.D., director of the OHSU Pituitary Unit, one of the largest neuroendocrine centers in the country...more
Cushing's Disease is a rare glandular disorder that causes rapid weight gain.
Steve Owens of Ohio visited doctor after doctor who said he could solve his aches and pains by stepping away from the dinner table. It wasn’t until he took a flight to Portland that he learned he had Cushing’s. "The doctors say to step away from the table and you just… you don’t eat because you’re sick," he says. "But you don’t lose weight. It’s a terrible disease, just very terrible."...
Rare disease caused teen to double weight in a year
Sitting in her hospital bed just two days after brain surgery, Claudette Ingold felt positive about her chances of returning to school.
Ingold missed parts of the last school year due to excessive drowsiness and weight gain caused by Cushing’s disease, a rare syndrome that causes the pituitary gland to send out abnormal amounts of certain hormones...
STJFS on the boards writes... Hi- our local newspaper did a story on myself and cushings disease. I think they did a pretty good job. They don't have a website, so I'll copy/ paste it...
By: Meghan Reinke
The Community View
With the advent of several T.V. shows dedicated to the inner workings of the medical profession, many of us are used to seeing medical mysteries unravel before our eyes in an hour during primetime television. Dr. House figures out the treatment for a perplexing disease only minutes before the patient expires, the doctors of Grey’s Anatomy argue about the cause of a man’s paralysis, and a cure is found for an epidemic disease that is spreading like wild fire through a Chicago school on ER. Though we have the ability to watch these works of fiction almost every night during the week, rarely do any of us imagine anything like that happening to us or our family. Unfortunately for one area woman, a medical mystery held her hostage for a good portion of last year, and it is her goal to spread the word about the rare maladies Cushing's syndrome and disease...
Often misdiagnosed Cushing's syndrome ravages the body, but the hormonal disorder is treatable
By Jennifer Barrett
The Salt Lake Tribune
Salt Lake Tribune
April 17, 2006
Lee Udall Bennion noticed when her appearance slowly started to change several years ago.
She gained weight that she couldn't seem to lose. Her face became "moon-shaped." Hair grew in the wrong places and disappeared from areas where it belonged. Her hands and arms were easily bruised...
By: ARLENE FINE, Staff Reporter
Moon-shaped face, upper-body obesity and redness of cheeks and neck are all tell-tale external symptoms of Cushing’s syndrome. When something goes wrong, the typical response is “Why me?” So when I learned I had Cushing’s syndrome and asked the “Why me?” question, I sensed the answer is that I can share my experience with others about this highly debilitating but reversible disease...
April 8th (2006) is National Cushing's Awareness Day, a day designed to shed light on a rare disease.
One local woman fought to have this day recognized.
Autumn Stinton describes the disease as “a life-altering, frightening disease,” and has had a major impact on her life.
“You wake up one morning and you look in the mirror and you don't even know who you are,” Autumn said...
Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called "hypercortisolism," it is relative rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year.
A conference to create awareness about Cushing's syndrome has been planned for April 6-8 in Oklahoma City. Conference organizers hope to draw physicians, medical students, and other interested persons, as well as people who suffer with the disease to the event.
"Mystery Diagnosis" featuring Cushing's has returned to the Discovery Health Channel. Last time around, it was one of our youngest memebers, Sam. This time, it's Sharmyn McGraw (Sharm on the boards), long-time patient advocate. more
Karen Kinne is two different people: "before" and "after."
Just like the retouched models in questionable diet ads, only painfully real.
From adolescence to adulthood she was oddly obese, a glutton in her own eyes with no self-control.
But the problem wasn't diet or overeating.
Kinne grew bigger and bigger as an undiagnosed and rare hormonal disorder was dragging her toward an early death.
She was weak and sleeping 20 hours a day when physicians figured out that she had Cushing's syndrome and a Yale surgeon intervened.
Now Kinne, 32, is a new person...
By John Gullion
The Selma Times Journal
Date published: Friday, December 31, 2004
Everyone that knows her will say Kaitlyn Elizabeth Burbage is a miracle baby. In a way that's true because all babies are miracles, even the ones whose parents don't know it.
But what separates 8-month old Kaitlyn from the pack, aside from the beautiful, big blue eyes that light up her face when she smiles, is that she has a miracle mommy.
Kaitlyn's mommy, Kelli Burbage is living a miracle. The doctors say she shouldn't have been able to get pregnant. The doctors said if she did manage to get pregnant, her body would reject the baby. The doctor who saved her life said if the tumor that consumed her pituitary gland had lasted much longer, Kelli Burbage would be dead right now.
Burbage, who suffers from a condition known as Cushing's Disease, is a living example that sometimes-even doctors are as human as the rest of us....
By MARCIA ARMSTRONG
The Free Lance-Star
Date published: 3/9/2004
THERE WAS A moment in 1999 when Jayne Kerns just knew that something was wrong with her body.
The Spotsylvania County resident was tired and irritable. Her muscles hurt. Her hair was falling out.
The silvery stretch marks acquired while pregnant with her daughter Catherine turned into angry, purple streaks. Kerns wasn't losing the pregnancy weight, either. In fact, the pounds were still piling on.
"I was walking every day, eating right, doing the 'Best Odds' diet," said Kerns, 40. "But, it wasn't helping. I just didn't feel right."
One doctor said Kerns' complaints were not unusual for a postpartum body. When another told her to exercise more and eat less, she kept a diary of the fat, carbohydrate and caloric content of everything she ate and began walking a mile three times a day...
Monday, February 16, 2004. An article by Susan L. Oppat in the Ann Arbor
Old photos tell the story: The moon face, the chubbiness that was almost all in his belly, the relatively small backside and the short stature compared to his siblings.
...But until he switched doctors in 2002, a small tumor, about the size of a dried split pea and buried inside the dime-sized pituitary gland in Siller's head, went unnoticed.
The benign Cushing's disease tumor had for years sent the level of cortisol, a natural steroid, raging out of control in Siller's body. His cortisol level was eight times higher than normal, putting him at risk for diabetes, high blood pressure, stroke, bone loss and, likely, an early death. And no matter how active he was - Siller mowed 25 lawns a week in the summer, worked out on a treadmill and exercise bike, and played with his three young and active children - he was still big, and getting bigger...
Women's Day, March 9, 2004 issue. An article by Cushings Help Organization, Inc. Message Board member, Sharmyn McGraw
For years I was a size two. I worked hard to maintain my weight by exercising and eating a healthy diet—I even had a personal trainer. But in 1993, at the age of 31, my body rapidly changed. In four days I gained 11 pounds, and by six months it was 85. I tried eating less and working out more, but my weight just kept going up...
Dr. Dori Middleman was interviewed on a Philadelphia-area public radio talkshow, Voices in the Family, and spoke about Cushing's Disease and how to make meaning out of illness and adversity. The show is available for listening online by going to Listen here
SALEM, OR -- After being diagnosed with Cushing's disease, a brain tumor on the pituitary gland, David Beranek played "God Will Make A Way" on the piano often to help give him hope. He was diagnosed June 13, and in October, doctors successfully removed the tumor. Beranek slowly is recovering.
June, 2003, at the Endocrine Society Conference (Endo2003) in Philly, MaryO was interviewed for the PBS program Voices of Vision. Also featured: Dr. Mary Lee Vance, Dr. James Findling and a patient having a PSS (Petrosal Sinus Sampling)
From Voices of Vision, a company that makes documentaries for PBS:
It's relatively rare, but better diagnostic methods are making Cushing's Syndrome more visible to the general public. A debilitating disease that causes the overproduction of cortisol, the substance that regulates blood pressure, and the metabolism of proteins, carbohydrates and fats, Cushing's has no known cure and treatment is often complicated and risky. The doctors at St. Luke's Medical Center in Milwaukee are some of the few who are working to bring better diagnosis and treatment to those afflicted by this condition. Please visit www.aurorahealthcare.org, www.cushings-help.com
This Voices of Vision special on Cushing's will begin airing on stations that choose to carry it within the first two weeks in January, 2004. A phone call or email to your local PBS station could be helpful in ensuring that your station carries this special program. With the potential of reaching 90 million viewers in the US, this is a huge step towards increasing public awareness.
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)
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.
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Cushings-Help.com, and quotes from MaryO was included in the Cover Story of this issue of Forbes Magazine, Best of the Web Issue, on stands June 11, 2001. The title: "Use With Care" by Matthew Schifrin and Howard Wolinsky.
Hopefully, this kind of mainstream exposure will help increase awareness for this often misunderstood disease. Read the article here.