Prince George’s woman works to raise awareness about rare disease

Lanham resident to speak at Patient Education Day event about Cushing’s disease

By Sophie Petit Staff Writer

Greg Dohler/The Gazette

Lanham resident Stacey L. Hardy, a survivor of Cushing’s disease, will speak about her experience with the pituitary disorder at an upcoming event at Johns Hopkins Hospital.

Stacy L. Hardy of Lanham described herself as athletic, which is why she became concerned when in 1996 she mysteriously gained 240 pounds that took five doctors 14 years to determine she had a potentially fatal disease.

Now Hardy said she wants to raise awareness among others who may unknowingly have Cushing’s disease, but are unaware of the symptoms and treatment.

It wasn’t until 2010 that Hardy, now 43, was diagnosed with the disease, a rare disorder that causes the body to release too much cortisol, the body’s stress or “fight or flight” hormone, said Gary Wand, a pituitary gland specialist at The Johns Hopkins Hospital in Baltimore.

Excess cortisol causes weight gain, especially in the stomach, extreme fatigue, muscle aches, anxiety and depression, he said.

“I didn’t even know what Cushing’s was. I was ready to just live with [the symptoms],” Hardy said, adding that by the time she was diagnosed she felt so tired she could barely move.

At 5 feet, 4 inches tall, Hardy said she reached 365 pounds during her struggle with the disease.

“We knew something for a while wasn’t right, but I never thought it would be something like that,” said Hardy’s daughter, Paij Hardy, 21, a student at Baltimore City Community College.

Just three out of every one million people are diagnosed with Cushing’s each year, said Wand, who estimates he sees 30 patients per year worldwide.

In 2011, Hardy underwent 16 hours of surgery at Sinai Hospital in Baltimore to remove four tumors from her pituitary gland, located at the base of the brain that controls the release of cortisol.

Today, she is 100 pounds lighter, with the weight still rapidly coming off, and said she is determined to serve as a lifelong support and education source for her fellow “cushies” — others with Cushing’s disease.

Hardy will speak Saturday at the Johns Hopkins Pituitary Gland Center’s fifth annual Patient Education Day, an event to raise awareness about the disease, Wand said.

Since the pituitary gland is the size of a kidney bean, Hardy underwent several brain scans before doctors, who previously suggested she might have leukemia or needed to diet and exercise more, could tell there were tumors on her gland, she said.

Hardy’s experience with delayed diagnosis and misdiagnosis is not unique, Wand said.

Cushing’s is a “subtle” disease, which is difficult to diagnose, and not everyone exhibits the same symptoms, he said.

If left untreated for more than a decade, the disease is fatal, but removing the pituitary gland tumors has proved extremely successful, Wand said.

“I’m evidence that there’s help out there,” Hardy said. “I can move. I can almost run. I can bend over and pick up a box. Oh my goodness, I can dance.”

From http://www.gazette.net/article/20130926/NEWS/130929354/1077/prince-george-x2019-s-woman-works-to-raise-awareness-about-rare&template=gazette

A Pill That Stops Stress In Your Brain Before You Feel It

Stress makes many of us miserable — but it can also kill you. Besides just causing horrible anxiety and depression, the physiological basis for stress has also been linked to diseases as varied as obesity, postpartum depression, Cushing's syndrome, epilepsy, and osteoporosis. But what if we could just turn your brain's stress response off?

Now, researchers from Tufts claim to have pinpointed the way that stress hormones hit specific receptors in your brain — and they've even been able to block them. This could lead to the next great psychopharmaceutical breakthrough.

The Tufts researchers discovered that stress pathways are activated by neurosteroids acting on corticotrophin-releasing hormone neurons in what's known as the Hypothalamus-Pituitary-Adrenal axis. By blocking the synthesis of the neurosteroids, they stopped the elevation of corticosterone, and prevented anxiety in mice.

"We have identified a novel mechanism regulating the body's response to stress by determining that neurosteroids are required to mount the physiological response to stress. Moreover, we were able to completely block the physiological response to stress as well as prevent stress-induced anxiety," said author Jamie Maguire, PhD.

Now the team is focusing on modulating the neuroreceptors to treat some of the diseases that accompany stress — be they depression, anxiety, or epilepsy.

From http://io9.com/5867762/a-pill-that-stops-stress-in-your-brain-before-you-feel-it

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Cushing's Awareness Day passes but disease lingers for reader

Dear Dr. Gott: Would you please mention that April 8 was Cushing's Awareness Day

I was a healthy woman until the age of 55. After more a year, I was diagnosed with Cushing's disease. I have had two brain surgeries, Graves' disease, recurring Cushing's and 25 radiation treatments to the pituitary. Eight years later, I still live with the effects of this monster. Thank you, Dr. Gott.

Dear Reader: Unfortunately, I was not able to print your letter on April 8, having only received it on April 6. It takes about three weeks before any letter appears in the newspaper.

Cushing's syndrome is a rare endocrine disorder. It occurs when the body produces or receives too much cortisol over an extended period of time.

Cortisol is a vital component in the body. It helps the body respond to stress, maintain blood pressure and cardiovascular function, regulates carbohydrate, fat and protein metabolism, reduces the inflammatory response of the immune system, and balances the effects of insulin.

The most common symptoms include a rounded face and upper body (abdomen, upper back, neck and between the shoulders ("buffalo hump"), obesity and relatively slender arms and legs.

Other symptoms can include acne, slow-healing cuts, bites or infection, bone loss, muscle weakness, fatigue, cognitive difficulties, high blood pressure, high blood glucose levels, headaches, thin skin with easy bruising, purple/red stretch marks, depression and/or anxiety, abnormal menstruation and excess body and facial hair in women, and erectile dysfunction and a decrease in libido and fertility in men. Children typically present with obesity and slowed growth.

Write to Dr. Gott, c/o NEA-United Media, 200 Madison Ave., Fourth Floor, New York, NY 10016.

From http://amarillo.com/news/local-news/2011-05-23/dr-gott-rare-cushings-causes-multiple-problems