BY COLLEEN LUTOLF
Staff Writer
MIGUEL JUAREZ staff With over 145 known autoimmune diseases, almost everyone is related to or knows someone who has an autoimmune disease. Jean Shafer, of Brick, walks for her daughter Rebecca, who has ulcerative colitis, during the Autoimmune Information Network’s first walk-a-thon at Brick Reservoir. Marlene Stoever, 48, of Brick, sometimes gets looks from fellow shoppers whenever she parks in a handicapped parking spot.
“To look at me, you’d think I was fine,” Stoever said Saturday during the Autoimmune Information Network’s (AIN) fundraising walk at the Brick Reservoir. “I have scarring on my lungs, and in the middle of winter, it’s hard to breathe. It’s asthma magnified. I need to park close to the store.”
Stoever was one of 47 volunteers who helped 112 walkers complete one to two laps around the reservoir for AIN despite Saturday’s iffy weather forecast.
Stoever was diagnosed with scleroderma on her 40th birthday. It’s an autoimmune disorder that results in scarred lungs. How did her lungs become scarred? Her body did it to itself. That’s what an autoimmune disease is – the body attacking itself.
“We have problems and no one sees it,” Stoever said. “You’re not going to stop everyone and tell them your story.”
Stoever’s story is unfortunately familiar for millions with autoimmune disease.
“It took seven years of testing before they figured out I had scleroderma,” she said.
Stoever also has two other autoimmune diseases, Raynaud’s phenomenon (diagnosed at age 19) and Sjogren’s syndrome (diagnosed five years ago). Raynaud’s causes fatigue.
“Doctors told me it’s in your head – you have Epstein-Barr, you need a hobby,” she said. “When women complain of being tired, people assume they’re just lazy.”
Sjogren’s syndrome is also called the “patriotic disease” because it causes a person’s extremities to become numb, coloring them red, white or blue.
Stoever attended the walk-a-thon Saturday with her husband, Jim.
“I’m here because two-thirds of my family is affected by [autoimmune disease],” he said.
The Stoevers’ son, who is 23 and healthy now, was diagnosed with ulcerative colitis when he was 18.
“He’s fine now,” Marlene Stoever said. “He took the stress out of his life and got a job he loves …”
“But he went through hell,” Jim Stoever finished.
“It’s very difficult,” said Pat Daffan, of Hazlet, who walked with and for her daughter, Stephanie Ritacco, of Brick. “One of the biggest problems is that she doesn’t look like she’s really sick.”
Ritacco, 33, has mixed connective tissue disease, a sort of autoimmune disorder hodgepodge of lupus, dermatomyositis and colitis.
“I suffer from severe fatigue, muscle and joint pain, hair loss, skin rashes, so many different symptoms,” she said.
“The lupus came on first, and the other two came on together a year later,” she said. “So many times you get one and then you get others.”
The Stoevers participated in AIN’s walk-a-thon, which raised over $6,000 by Monday with donations still coming in, to raise autoimmune awareness and donate money for the only organization that has really helped their family.
“It’s really nice with Barb,” said Stoever, who is also AIN’s vice chairwoman. “If you have a question and she doesn’t know the answer, she’ll research your question and get back to you with an answer. Other organizations, it was a job for the woman – you’d ask her a question and there was no followup.”
“Barb” is Barbara A. Yodice, AIN’s executive director. Yodice, who has five autoimmune disorders, works for free, as does every AIN board member.
“The MS [multiple sclerosis] Foundation, the Lupus Foundation, make money for their administrative costs, Barbara didn’t have any of that,” Marlene said. “I don’t have a salary, Barb doesn’t. It’s all help.”
The CEO of the MS Foundation earns $142,790 annually, Yodice said. Yodice and her husband, Keith, who share the executive director’s post, earn $0.
“Nobody draws a paycheck,” she said.
That’s why when autoimmune patients find AIN, they stay.
“It’s a wonderful support group,” said Dottie Chapin, of Brick.
Chapin has Hoshimoto’s thyroiditis, fibromyalgia and rheumatoid arthritis – all autoimmune disorders.
“It’s nothing like you’ve ever been to,” Chapin said of AIN’s support group meeting that is inclusive of everyone with an autoimmune disease. “It’s upbeat. It’s great. Other groups, I hate to say it, are like a pity party. Pity-party people come in, but they don’t come back. It’s all about finding a better way to deal with it. Barbara’s a walking book of knowledge that’s irreplaceable.”
Terry M. DeVogel, Yodice’s sister, shares the vice chair post with Stoever.
She said AIN is the only organization that inclusively connects all autoimmune disease patients regardless of their specific disorder.
“There is a national organization that raises money for research, but they don’t help anyone,” she said. “We’re the only ones.”
AIN is also the only group that has ever held a fundraiser at the reservoir.
Yodice said she was apprehensive about asking the Brick Township Municipal Utilities Authority (BTMUA) commissioners’ permission to use the reservoir, but that it approved the request almost immediately.
BTMUA workers helped AIN throughout the walk-a-thon, which began at 9 a.m. and ended at noon.
“I can’t say enough about the people here,” she said. “They cut the grass for us, they helped volunteers lugging tables, driving people back and forth. It’s great to see everybody pitch in together.”
Jimmy Kay, of Toms River, DeVogel’s boyfriend, has multiple sclerosis.
“It’s all how you look at it. You ever see a kid with cancer? A 10-year-old? I could care less if I walk a little funny,” he said. “This is about awareness. You gotta get it out there and people gotta wake up and learn. You can’t quit. You think it’s you, like you’re the only one who’s got it. You’re not.”
AIN meets the fourth Sunday of every month at Ocean Medical Center, Jack Martin Boulevard, Brick. The next meeting is Sept. 24 in Conference Room B.
Call the Yodices at (732) 262-0450 or log on to www.aininc.org for more information. You can also e-mail AIN at [email protected].
You may send donations to: Autoimmune Information Network Inc., P.O. Box 4121, Brick, NJ 08723. AIN is a nonprofit organization.