Woman's battle against disease amyloidosis ends

Patti Benisek found reason for optimism in her yearlong battle against a rare, heart-weakening disease.

But the damage had apparently already been done.

Benisek, 48, of Palatine, died Sunday at Benisek ManorCare Health Care in Rolling Meadows, where she was undergoing physical therapy to regain strength after an intensive six-week chemotherapy program and a bone marrow transplant last November.

"The treatment stopped the disease from progressing, but the damage that was done to her heart prior to the treatment was irreversible," Sylvia Benisek, Patti's sister-in-law, said.

Patti Benisek, who worked as an export coordinator for Antec International in Rolling Meadows, learned last summer she suffered from amyloidosis, a disease that causes the organs of the human body to accumulate an overabundance of proteins. For Benisek, it was the wall of her heart that suffered, thickened by the protein buildup.

"The disease caused her to suffer congestive heart failure," Sylvia Benisek said, expressing shock the condition did not manifest itself more slowly. "At no point did we think she was getting worse or dying."

A memorial service for Benisek will be held at 1 p.m. Saturday at the First United Methodist Church, 1903 E. Euclid Ave., Arlington Heights. The family is asking donations be sent to the Amyloidosis Research Fund, Boston University School of Medicine, 715 Albany St., Boston MA 02118.

Hope for life

Benisek underwent the chemotherapy treatment and bone marrow transplant at the Boston Medical Center, hoping it would mean a return to a life as an avid walker and tireless worker. She noted last year that some people receiving the treatment returned to rigorous activities, such as mountain climbing.

Benisek wanted to be one of those success stories.

"I intend to be the poster girl for how well this treatment works," she said in an interview last year.

A friend of hers, Dorene Kleba, said Benisek learned in February on a return to Boston that the treatment has been 95 percent effective in eliminating the amyloidosis condition. But Benisek's heart condition continued to cause her problems.

"She started retaining fluids and apparently her heart was not strong enough to get rid of all the fluid," Kleba said.

Benisek spent a week in Lutheran General Hospital in Park Ridge last month, and had been staying at ManorCare for the past few weeks. She moved up to a higher level of physical therapy just last week.

"She was very positive, and I wase was very positive, and I was also," Kleba said. "I never saw a more positive person in my life."

Kleba helped organize some fund-raising activities when Benisek's insurance company, Rush Prudential HMO, claimed the treatment in Boston was experimental and refused to cover the $45,000 cost.

"My main goal was that she was stressed out at the very beginning of this because they would not cover any outpatient stay at a hotel, and she didn't have the finances to do that," Kleba said.

After the HMO made its decision, Antec International stepped in and agreed last year to pay for Benisek's treatment.

Accounts were set up at local banks to raise funds for expenses, as well, but Sylvia Benisek said her sister-in-law's expenses have been covered. She said donations now should be directed toward research into the disease.