VF in the News

Tiffany’s Story

Tiffany’s life changed forever when she was 14 years old. One day she was a happy ninth-grader at Sherando High School, getting ready for her homecoming dance. Her only problem was a lingering ear infection. Days later she became a sick person, someone whose every day existence is spent taking medications, feeling rotten, often resting but always feeling tired.

And that’s when things are going well. When things aren’t going well she’s traveling to doctor’s appointments and in and out of hospitals.

Before Tiffany was correctly diagnosed for the mysterious ailment that gave her dangerously high fevers and one sinus infection after another she underwent multiple tests at several different hospitals.

Was it AIDS? Hepatitis? She had surgery on the inside of her nose to shave away the bone. She had five sets of tubes put in her ears. “Can somebody just give me a new head?” said the 26-year-old Tiffany.

A pediatric immunologist at the University of Virginia, Dr. Frank T. Saulsbury, diagnosed her three days before Christmas in 1998, weeks after that ninth-grade homecoming dance. Tiffany had Wegener’s granulomatosis, part of the family of some 15 diseases known as vasculitis, an inflammation of the blood vessels, arteries, veins, or capillaries.

No one knows what causes vasculitis. It’s not hereditary. It’s not contagious. But it is forever.

“I didn’t hear anything, but, ‘It’s not curable,’ said her mother, Carla. “My heart dropped to my feet.”

If left untreated, Wegener’s granulomatosis can be fatal.

Tiffany has had surgery to remove kidney stones and has been hospitalized numerous times for dangerously high fevers. She takes numerous medications every day. The steroids she takes make her body swell. Other medications, similar to chemotherapy, cause her to lose her hair, make her nauseous, and give her bladder infections.

Tiffany said she is willing to tell her story and have her photograph taken, to bring awareness to the disease. If more people know about it, then maybe more money will be spent on research, she said. “Hopefully, they will find a cure for it because it needs to be done,” Tiffany said.

Her body has little immunity to disease, so she must be careful about visiting with friends or going on a vacation. During the swine flu scare, she tried to be first in line to get the vaccine. “I was freaking out about that,” Tiffany said.

Tiffany’s life isn’t all downbeat. She has plenty of love and support. She got married when she was 24 to Aaron, a young man she met while working at Kmart while in high school. “He is a trooper,” her mother said. “She couldn’t have picked a better person.”

Her mother lives close by and helps drive Tiffany to doctor’s appointments and take care of her when she’s feeling ill.

Said Carla, “We cry a lot and we laugh a lot.”

Excerpted from The Winchester Star, July 12, 2010

Published: March 2012

To read more stories, please visit the Vasculitis Stories landing page.