The title of this is awful :(

[~MaryO~]

http://www.seacoastonline.com/news/1130200...shings-n29.html

 

11-30-2006

 

'The ugly disease'

 

By Toby Hatchett

features@seacoastonline.com

 

When Fedela Vincent, 68, of Rye, was diagnosed with Cushing's disease, she was relieved, almost happy. After more than three years, she knew what was wrong with her.

 

Vincent had spent years trying to figure out what was wrong with her, what was happening to her and her body. A petite woman, of 5 feet, she had always been trim and fit. She ate right, worked out at the gym and led a healthy lifestyle.

 

But, for no apparent reason, she began to gain weight. Lots of weight, primarily in the upper body.

 

"I looked like an apple, with a moon face," Fedela says. "Cushing's is not called ?the ugly disease' for nothing."

 

Cushing's disease victims don't share the same symptoms, but many of the symptoms are physically noticeable: the extreme weight gain in the upper body, the moon face, a buffalo hump on the back, hair loss and blotchy, red skin with breakouts.

 

"Feeling constantly cruddy" is the polite description of being a Cushie," Fedela says.

 

Then there are the other symptoms, those not visible on the outside. Fedela says the worst for her was the insomnia, the anxiety, the fear of abandonment and pain. The joints hurt, the muscles lose their mass and walking is difficult.

 

When Fedela was at her worst, she couldn't walk up the stairs, let alone cook or shop. She was as weak as a kitten, she says.

 

Her doctors at this time urged her to lose weight, giving medications that often made her sick in an effort to solve the problem.

 

Bob Vincent, her husband of 48 years, never left her side during this difficult time. Cushing's disease is such a traumatic disease that it is estimated more than half of husbands leave their wives. The mood swings can be dramatic.

 

"When Bob would bring me coffee," says Fedela, "he never knew what to expect."

 

Then Fedela decided to try a different kind of doctor. She went to Dr. Jennifer Warren, in Hampton, who specializes in weight control. In Warren, she found someone who listened to her and paid attention. Warren was the first doctor to suggest Cushing's disease might be the cause of Fedela's weight gain.

 

From that moment on, things began to happen. Fedela went to Dr. Daniel Nadeau who put her on a diabetes-related medication for weight loss. This didn't work and after a month, she was given a simple urinalysis test. Within 24 hours, she had her diagnosis.

 

Nadeau referred Fedela to the Lahey Clinic, in Burlington, Mass. There she met the doctor she now calls her "savior," Dr. Nicholas Tritos. This clinic is world-renowned for its work in pituitary malfunctions.

 

What is Cushing's disease? It is the body reacting to a constant overdose of steroids being released by the adrenal glands. The pituitary gland over-stimulates the adrenal glands, which in turn send crisis-level chemical messages to all the other endocrine glands.

 

"The body reacts to the hyper-stimulation by constantly being in a state of fight or flight," says Fedela. "It's 24/7 with no relief."

 

Cushing's disease affects an estimated 10 to 15 out of every million people. The fact that it is relatively rare in numbers is one cause of the lack of public knowledge and awareness of this disease.

 

Non-diagnosed, Cushing's disease can lead to uncontrollable diabetes, and eventually, death. The symptoms can be so varied and mimic so many other conditions, that Cushing's disease is often not diagnosed or misdiagnosed.

 

"The not knowing what is wrong with you is awful," Fedela says, "and the way people look at you when you're not what society calls ?normal.'"

 

"People would tell me ?you are what you eat' and suggest I try Weight Watchers, things like that."

 

But Fedela was carefully watching what she ate, often eating less than her doctors prescribed. Even when her energy level was almost non-existent, she and her husband would go to the gym.

 

"Bob wouldn't let me stay inside. We kept going out, for drives, to Market Square and lunch with friends."

 

After the initial diagnosis, Fedela spent six months undergoing various tests.

 

Then, on Mother's Day of this year, during the New Hampshire floods, she was operated on. Fifty percent of one side of the pituitary was removed and 25 percent of the other side to remove the offending tumorous tissues.

 

Fedela spent five days recovering at the Lahey Clinic.

 

"The whole staff was just wonderful. The nurses would pop in to see what a Cushie looked like. They never left me alone."

 

When she came out of the surgery, Bob was there beside her, along with a very special teddy bear.

 

"The teddy bear was hugged by members of South Church, including the children Fedela taught in her kindergarten class," he said.

 

The blessing of this disease, as Fedela describes it, is in learning how to receive. Having long been a giver herself, this was not an easy lesson to learn. South Church, in Portsmouth, put together a Fedela Vincent Support Group, with people from Portsmouth, Rye, Salem, Mass., and Greenland, to provide moral support, company and meals. For six weeks, day and night, someone was there.

 

"South Church is an amazing institution," Bob says. "The support group was invaluable. Fedela received over 250 cards from all over the country."

 

This support group is still there for Vincent as she continues to recover and regain her health. She still has problems, but she can now lead a more normal life. "I can shop!" she says with a grin.

 

"I wanted to do this interview as a call to the medical community to be alert to the symptoms of Cushing's disease and to really listen to their patients."

 

Fedela also hopes that by sharing her story, others may learn that diet alone is not always the cause of weight gain. America's obsession with skinny bodies and the resulting negative judgmental views on those who do not fit this picture is something she hopes people may think twice about before making judgments.

 

Lastly, Fedela wants to publicly thank her husband, family, friends and physicians who have stood by her during this difficult struggle. She still has a long way to go, but she is on the mend now and knows what was wrong with her.

 

"The not knowing what was happening to me was the worst of all."

 

"If by telling my story, I can help even one person not go through what I did, then it's worth it."

 

Tritos, a leading endocrinologist at the Lahey Clinic, says it is common for Cushing's disease to not be immediately diagnosed.

 

"It is common because the condition itself is uncommon. The symptoms are subtle and can be attributed to other causes."

 

"In Fedela's case, her own body was producing an overload of steroids."

 

There is a peculiar type of weight gain, in the face, neck and upper torso. Unfortunately, it can take awhile to be diagnosed.

 

"Most patients go from one doctor to another before Cushing's disease is diagnosed."

 

Also, Tritos says, sometimes the tests are inconclusive.

 

But once on the appropriate path, most patients can be helped.

 

Tritos also notes the value of a good support system, which Fedela had in place.

 

"The support of family and friends is very important. By telling her story, Mrs. Vincent will increase the public's awareness of Cushing's disease."

[staticnrg]

Excellent article! It is an ugly disease. Not so much for what it makes us look like, but for what it does to our lives and the difficulties of diagnosis. This was well-written. The author took some time to get good information. Thanks, Mary!!

Robin

[JenS]

Yeah... actually, he wrote some good quotes like:

"Most patients go from one doctor to another before Cushing's disease is diagnosed."

 

Isn't that the truth... so while the title is a bit... unfortunate, it actually is a good article.

[mertie]

I read this term "the ugly disease", in an article a couple of days ago. I'd never heard it before, but I do feel really ugly. But that's a self-perception maybe we all have. I know it's part of the reason I want to hide in my house and never go out!

But I thought it was a really good article, too. I am going to forward it to my sister....maybe it will help her understand. Thanks Mary!

[~MaryO~]

Kind of reminds me of this article from Men's Health Magazine http://www.cushings-help.com/youd-rather.htm

 

 

You'd Rather Be Dead ...

 

SWIERCZYNSKI, DUANE

Men's Health

December 1, 1999

 

... than have any one of these 10 horrifying and peculiar afflictions

 

THE PHILOSOPHER Mel Brooks once said, "Tragedy is when you cut your finger. Comedy is when you fall down an open sewer and die." If this is true, then the following story contains the most comedic material you've ever read.

 

We're about to present the 10 most miserable diseases on the face of the earth. They're hideous, painful, and in some cases downright phantasmagoric. Their symptoms make you long for a comparatively pleasant malady, such as a brain tumor or paralyzing stroke.

 

You may ask yourself, "Why, God? Why is Men's Health printing this collection of biological atrocities?" Well, we hope you'll scan this list of horrifying maladies and thank the Higher Powers that you don't have them. What was it you were saying earlier about the sniffles?

 

....

 

Affliction 4

 

Your head swells to the size of a basketball

 

* Possible cause: Cushing's syndrome (a.k.a. hypercortisolism)

 

When most people worry about gaining weight, the parts they usually think about are below the neck. But for victims of Cushing's syndrome, a hormonal disorder, it's the opposite: Their heads and necks swell to a John Goodman-like degree.

 

To blame is an overabundance of the hormone cortisol--either produced by your body or from hormone therapy used to treat certain ailments, such as rheumatoid arthritis. Ordinarily cortisol is your friend: It helps your body maintain its blood pressure, keeps your inflammatory response in check, helps balance the effects of insulin, and regulates the metabolism of proteins. Too much of the hormone, however, and the body goes wacky, allowing huge amounts of fat to deposit from the neck up, and rendering your skin fragile and easily bruised from the neck down.

 

* Chances of contracting it: Slim. Cushing's syndrome affects about 10 people per million. Fortunately, there are several treatments and therapies available to keep the Spalding endorsement people away.

 

I know that all they say is true, but I'm not (always!) sure that I'd rather be dead.

[mertie]

I sent the first article to my sister and she sent the sweetest, most compassionate letter back. Maybe she gets it? I think so, anyway. Thanks again, Mary.

 

I am thinking of sending it to my HR department, too!

[ChatiCat]

Kind of reminds me of this article from Men's Health Magazine http://www.cushings-help.com/youd-rather.htm

I know that all they say is true, but I'm not (always!) sure that I'd rather be dead.

 

The "Ugly disease" article was written much better than the "You'd Rather Be Dead" article. Also, that is how Mrs. Vincent referred to her own Cushing's disease so it didn't offend me. When journalist write things that are not true sort of bugs me. "Such as the "You'd rather be dead" article referred to our heads being like basketballs.

 

I have been known to refer to my Cushing's as "The Monster" oh yeah....and when I see myself in a dressing room I just have to laugh because I look like the "Pillsbury dough girl" :ph34r:

[vinesqueen]

I sent a short note to the paper and the author thanking them for the article.

[Cherri's Not New]

Unfortunately I have been calling it that for years. I'll storm around the house yelling, "I hate this blankety-blank ugly blank disease" So I guess my title for it has a variation.

 

Cherri in AL

[justashell]

Equine Cushings Disease (ECD) is also called "Old Horse Disease"----that's exactly how I feel---like an old horse.