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Living with chronic fatigue syndrome: Woman struggles with the 'invisible disease'

Left to right, Mary and Candy Gelpi (FOX 8 Photo) Left to right, Mary and Candy Gelpi (FOX 8 Photo)
NEW ORLEANS, LA (WVUE) -

Imagine you're a vibrant, healthy child, competing in athletic events and looking forward to a bright future. But suddenly, you catch the flu, and life as you know it changes forever.

It's known as the “invisible disease,” and many sufferers want more attention for an illness that has no cure.

Mary Gelpi was filled with hopes and dreams. Bright, ambitious and talented, Gelpi excelled. But as she accumulated awards for gymnastics and made good grades in school, she caught the flu. And it wasn't just any flu.

"I remember after a couple of weeks having a constant headache and this muscle aching - not like the soreness after you work out," she said.

As a 10-year-old fourth-grader, she didn't have the strength to remain in school, so she had to be home schooled. Her gymnastics career sidelined.

"Every time I jumped from bar to bar, my hands would slip," she said.

That was 23 years ago, when Gelpi's life changed in a way few could imagine. She lost the energy that propelled her on the gymnastics floor.  She also found that she lacked energy for just about anything.

Now, prescription medications are her constant companions.

"I think I'm taking 10 daily, and I have side medications to take as needed," she said.

"You have the invisible disease,” said Gelpi’s doctor, cardiologist Umesh Patel. “You look great, but internally you don't feel well at all."

Patel believes the disease is an affliction of the body's nervous system, but its source is unknown. And in spite of all the medications, there's little relief.

"It's really hard when you feel like you're letting people down," Gelpi said.

Most days she stays in her pajamas, and rarely ventures from the house or the yard unless she's going to the doctor.

"It's not just lackadaisical fatigue, it's bone crushing weakness,” she said. “You can't hold a cell phone to your face."

Through the years, Gelpi managed to regain 70 percent of her strength, returned to school and eventually earned a degree from LSU.  After graduation, she found work as a sales rep for an antique store, but her chronic fatigue syndrome came back.

"When I relapsed, I was 26,” she said. “I had my own apartment, went to work every day, had my routines and friends."

It was one of the worst setbacks of her life.

"I knew if I can't keep this job, then the illness has me," she said.

Doctors don't know the exact cause, but there appears to be a common thread.

"My mom is a nurse and also has the disease," said Gelpi.

Many sufferers have a parent who has the disease.

"Oh God, you're going to make me cry," said Gelpi’s mom Candy,  a former ER nurse. "It's the worst to watch her suffer and to know who she is and how hard she tries, and I'm so proud of her."

With a degree in journalism, Mary Gelpi decided the best thing she could do  was write.

"I have a blog called 25pillsaday.com," she said

"I have to give her kudos for putting on a brave face and getting out there," said Patel.

Mary tries to use humor and has made her dog, Montie, a star of her blog, which has thousands of followers. Her goal is to document her illness and give other sufferers a forum.

"This is up to three million people in our country alone,” she said. “There's a $10 billion economical impact."

She also started an online petition, using her blog to collect 30,000 signatures to get the attention of the National Institutes of Health which is currently spending $5 million a year to study the illness.

"I think $10-$50 million would give it a good kick start," said Patel.

Mary Gelpi said she's one of tens of thousands of sufferers having a difficult time leading a normal life, and she said the NIH is spending a lot more money on diseases she considers far less serious.

"It's an insult,” she said. “Male pattern baldness gets $5 million a year, hayfever $6 million a year."

"A lot of this is learning to live with the disease, because right now I don't have a cure," said Patel.

Doctor, mother and daughter hope for some type of breakthrough so they can experience life with the kind of energy most take for granted.

"Nobody wants to get better than the patient, because you…lose your life," Gelpi said.

The Gelpis are reaching out to congressional leaders for help.  They believe it will cost a lot of money to research chronic fatigue syndrome, but they say when you consider the costs associated with the illness, a remedy will be worth it.

For more on funding for ME/CFS, click here

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