Amy Schumer diagnosis boosts central Pa. woman who battles same rare illness

If you searched online for Cushing’s syndrome two weeks ago, the most prominent results would have centered on dogs and horses.

That changed dramatically after actor and comedian Amy Schumer revealed she has the condition, which experts call “fairly rare.”

The resulting attention is welcomed by Marie Conley of Dauphin County, who has struggled with the disease for about 15 years and waged a tireless effort to raise awareness and support others who have it.

Cushing’s results from the body producing too much of a hormone called cortisol. It can cause symptoms including facial puffiness and weight gain, as well as more serious medical problems including high blood pressure, bone loss, mood disorders and depression. It’s most common among people between the ages of 20 and 50, although children sometimes get it, and it’s three times more prevalent among women.

There are two kinds: One usually results from steroid-like medications used to treat illnesses such as asthma, rheumatoid arthritis and lupus. That’s the kind Schumer has. The good news for Schumer is that, through medication and treatment adjustments, or no longer needing the medication, she can expect her health to eventually return to normal.

The second kind typically results from tumors on the pituitary or adrenal glands that cause the body to produce excess cortisol. That’s the kind Conley has. And like many who come down with it, Conley endured a long, painful ordeal before doctors figured out what was wrong.

“For three years, I knew I was sick and no one believed me,” she says.

That has much to do with why she’s so glad for the spotlight Schumer is shining.

Conley was a political consultant with a young son when she felt the first symptoms, which included weight gain and puzzling changes to the shape of her body. With Cushing’s, the weight gain is often concentrated in the upper body, including a lump of fat on the back of the neck.

A longtime runner, Conley intensified her training and doubled down on her already-careful diet.

But her weight continued to rise, increasing from less than 140 pounds to more than 200 in about three years.

She developed other symptoms, including hair loss, acne and mood swings that severely stressed relationships with her husband and family and impacted her ability to care for her son. She sustained a hip fracture resulting from weakened bones.

Sometimes she awoke in the middle of the night overflowing with energy. “With Cushing’s patients, they are constantly in a state of fight or flight,” she says. At other times she could barely rouse herself from the couch.

She saw a succession of specialists over about three years before receiving an accurate diagnosis. At times, she was told the problem was in her head, or the solution was to lose weight.

She has since learned it’s common for people to endure three years or more of misdiagnosis. All the while, they endure both mental and physical symptoms that can severely strain personal relationships and marriages.

Conley received a common treatment for her kind of Cushing’s: surgery on her pituitary gland, which is located in the brain. Unfortunately, it didn’t stop the faulty signals to her adrenal glands, which also had to be removed. She later required additional surgeries and has been hospitalized or gone to the emergency room dozens of times since then, including recently.

Today, Conley, 51, takes medication to offset the fact her body no longer produces adrenalin naturally, and has to carefully conserve her energy, although she considers that part a “silver lining.”

She likens it to a point system with a daily limit, causing her to allocate points to important things and not waste them on the unimportant.

“I only do things that are point-worthy. I only associate with people who are point-worthy,” says Conley, who runs a consulting business. “You have to find a silver lining.”

She also has persisted on a long mission to help others stricken with Cushing’s.

She founded The Conley Cushing’s Disease Fund, which maintains a support group and trains medical professionals to better understand the disease and its toll on patients. She also works with a national foundation devoted to Cushing’s, and co-chairs the PA Rare Disease Advisory Board. In that role on Thursday, she’ll participate in International Rare Disease Day, highlighting to state lawmakers that about 1.2 million Pennsylvanians suffer from rare diseases.

Schumer disclosed her condition after a recent TV appearance triggered nasty online remarks about her appearance.

It points to another thing Conley and Schumer have in common: a disgust with the body shaming often directed at woman. As Conley learned during her years of misdiagnosis, women with Cushing’s are especially vulnerable to body shaming.

As Schumer told an interviewer, “Everyone is struggling with something. Maybe we can all be a little kinder to each other and ourselves.”