EDISON – Before Peggy Schultz turned 14 years old, she was a healthy girl who liked to swim.
“I hardly ever got colds and the worst thing I would get was swimmer’s ear because I was in the pool too much,” said Peggy.
Then, when she turned 14, Peggy was diagnosed with Wegener’s granulomatosis, an uncommon disease that causes vasculitis and affects about 1 in 20,000 to 1 in 30,000 people. It can occur at any age. It most often occurs in the fourth or fifth decade of life.
Vasculitis, according to the Mayo Clinic, is an inflammation in blood vessels that restricts blood flow to the vital organs.
The onset of the disease can be slowmoving with few symptoms or have a rapid and severe onset. About 90 percent of patients have symptoms of a cold, a runny nose or sinusitis.
Now Peggy is 25 and said she pretty much stays at her house.
“I’m on disability,” she said. “I can’t drive. I don’t have much lung capacity and feel tired.”
Peggy spends her days walking her dog Angel, helping out with her neighbor’s dogs, helping around the house and also helping her mom with the Vasculitis Foundation.
Gail Schultz, who never heard about Wegener’s granulomatosis before her daughter was diagnosed with it, and her daughter are part of the Greater New York Chapter Vasculitis Foundation.
“Any research before 1970 would tell me that Wegener’s granulomatosis was a fatal disease,” said Schultz. “There have been improvements in the research and experimenting with different drugs that could help the disease.”
There is no known cause of Wegener’s, but it is not contagious, and there is no evidence it is hereditary. It is systemic, meaning it affects the body as a whole. It affects the upper sinuses and nose, and lower lungs, respiratory system and frequently involves the kidneys, lungs, eyes, ears, throat, skin and other organs. For reasons not clear, blood vessels in those areas may become inflamed and clusters of certain cells (granulomas) may occur.
Members of the foundation will appear on the “Today” show on NBC on Sept. 23 to promote vasculitis awareness and the annual Anthony DeSarno Memorial Walk/Picnic for Vasculitis Research at Roosevelt Park, Edison, on Sept. 29.
In addition, a Macy’s fundraiser, where patrons can receive a 10 to 20 percent discount on items at the department store as well as help the Vasculitis Foundation, will take place Oct. 13, and $5 tickets for that event are on sale.
“It’s important to heighten awareness of the disease,” said Schultz.
It all started when Peggy Schultz got a sinus infection when she was 14 years old.
“She was given medication for the infection, but nothing had changed at her next check up,” said her mother. “She was just getting sicker and sicker. She was sleeping a lot and having aches. A CAT scan revealed that there was no air going through Peggy’s sinuses.”
Schultz and her mom said she was lucky that her pediatrician, Dr. Anthony Santoro, sent her to other doctors.
“He told us that he could have looked at Peggy every day and still not have known what was wrong with her,” she said.
Gail said she remembers the day Peggy was diagnosed with the disease like it was yesterday.
“It was Dec. 10, 1996, and Peggy slept literally the whole day,” said Schultz, who said Peggy has little recollection of her ordeal. “She had lost her appetite. When I got home from work around 3 p.m., I woke her up, we stopped by the 7-Eleven to get her a soda and chocolate bar and then went to the doctor.”
At the doctor’s office, Peggy developed a massive nosebleed.
“That’s when we stayed at the hospital,” said Gail.
Peggy was home-schooled for most of her high school years and was able to graduate from Edison High School in 2001.
Gail said she hopes her daughter won’t be on disability her entire life.
“We are at a good point where she is in remission, but we have to constantly worry about infections, which she has had two this past year,” she said. “It’s been a long road, but the research on the disease has been moving in the right direction.”
For more information about the annual Anthony DeSarno Memorial Walk/Picnic for Vasculitis Research and the Macy’s event, e-mail Gail at [email protected] or call (732) 287-5248.
People who want to donate to the Vasculitis Foundation can send donations to P.O Box 28660, Kansas City, MO 64188- 8660, or call (816) 436-8211. For more information on the foundation, visit www.vasculitisfoundation.org.