Not Backing Down: Former local faces rare disease head on, with help

HARLINGEN — Luz Aviles-Lopez lives in St. Louis, far from her childhood home here in Harlingen.

But when she and her family have needed support and help, they hop in the car and head straight to the Rio Grande Valley.

That Harlingen love was needed and provided recently when a number of people came together to hold a Zumbathon fundraiser for Luz to aid in her battle against Cushing’s Disease, a form of Cushing’s syndrome. It was the second one of these types of fundraisers for the 38-year-old who used to call Harlingen home — her mother and sister still live in Harlingen.

“I am closer to friends in Texas than friends here,” she said while on the phone from her home in St. Louis. “But I have come to value things and thank God who I have when we need them.”

Those friends came through in a big way, led by her school friend for more than 20 years, Jessica Campos-Gonzalez.

Although the turnout wasn’t huge at the Zumbathon, they raised the amount of money it would take for the family to stay in Boston for the next couple days, because as soon as the Zumbathon was over, the family headed straight to the east coast.

However, it’s why she had to travel all the way to Boston and how her life has changed during the past five years that is even more intriguing.

This is Luz’s story, well at least the last five years of her life.

It was 2011 after Luz had her son, the third of three kids, when she started to lose her hair and had rashes develop on her face. A few months later, her father died.

At that time, it was believed by doctors the symptoms Luz was struggling with were due to stress.

She admits she fell into a deep depression that started to turn around in 2012.

Luz started working out and pushing herself, but she realized she wasn’t losing the baby fat. Actually, she was gaining weight. During this time, Luz said she was fatigued and moody.

There were times when she and doctors thought she had some sort of rare cancer.

Instead, it turned out to be high cortisol levels caused by a pencil-tip sized tumor in her brain. She had to have pituitary surgery in June 2014.

“Whenever things like this happen, there is no other choice than to start looking ahead of you and looking up,” she said.

That first surgery took some time to result in the cortisol numbers going down. Although the numbers are supposed to reduce within a few weeks, they didn’t decline as much as doctors wanted.

For the next year, she continued to have tests and in the meantime was tired and still unable to lose excess weight.

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What is Cushing’s?

Excess levels of the hormone cortisol are responsible for Cushing’s syndrome.

It can occur if the body is exposed to high levels of the hormone for a long time. It also may be caused by the use of oral corticosteroid medication. The body also can make too much cortisol on its own.

Cortisol is produced in the adrenal glands and plays a variety of roles in your body, including regulating your blood pressure and keeping your cardiovascular system functioning normally.

Cortisol also helps your body respond to stress and regulates the way you metabolize proteins and carbohydrates and fats in your diet for energy.

However, when the level of cortisol is too high in your body, you may develop Cushing’s syndrome.

SYMPTOMS

– Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump)

– Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms

– Thinning, fragile skin that bruises easily

– Slow healing of cuts, insect bites and infections

– Acne

– Severe fatigue

– Muscle weakness

Women with Cushing’s syndrome may experience thicker or more visible body and facial hair and irregular or absent menstrual periods.

Men with Cushing’s may experience decreased libido, decreased fertility and erectile dysfunction.

From www.mayoclinic.org