BY COLLEEN LUTOLF
Staff Writer
Barbara Yodice BRICK – Barbara Yodice doesn’t look sick. For her and some of the other 50 million autoimmune disease sufferers, that’s part of the problem.
It is common for someone with an autoimmune disease to remain misdiagnosed for months if not years, Yodice said. Those diagnosed within a year of first experiencing symptoms are considered lucky.
Some autoimmune diseases, like lupus and multiple sclerosis (MS), probably sound familiar. But others, like ankylosing spondylitis where a person’s spinal column begins to fuse with their skull and hip to form one long bone, or pemphigus vulgaris, a disease that causes burn-like sores to erupt on the skin and mucous membranes and could cause death because a person’s skin actually suffocates them, may sound like something out of a Stephen King novel, but it happens to people.
Instead of treating the disease, doctors often treat symptoms individually, not holistically.
“They put you on antidepressants so you’re happy you feel like hell,” Yodice said.
FILE PHOTO The Autoimmune Information Network will host its first walk-a-thon at the Brick Reservoir Sept. 16. All participants receive a free T-shirt and a free lunch. Registration begins at 9 a.m. The walk begins at 10 a.m. There are over 100 autoimmune diseases. These are disorders that cause the body to literally attack itself. The body believes some kind of antigen has entered the body and begins trying to fight it off. It is the immune system going haywire, Yodice said.
Yodice says it happens much more than even the patient realizes.
“Women have these diseases but they’re not getting listened to by their doctors,” she said. “People are out there suffering these conditions and symptoms, and no one can pinpoint what it is. If I can point them in the right direction, I can prevent them from suffering.”
Yodice, 34, has been diagnosed with five autoimmune diseases, including myasthenia gravis (MG), lupus, and fibromyalgia.
She’s also battling bone marrow cancer, but that hasn’t stopped her from founding her own nonprofit organization, Autoimmune Information Network (AIN), with her husband Keith two years ago.
AIN has helped autoimmune sufferers in 24 countries and almost all 50 states, she said.
The organization has paid for over $5,000 in medical services or medications for members, which numbers over 700. AIN has helped autoimmune disease sufferers obtain over $1 million in donated services, Yodice said.
“If people don’t have insurance and they need to get to a certain doctor, I’ll
call the doctor’s office and ask them to bill me,” Yodice said.
Donated physical massages, transportation to and from doctors, even pharmacies give patients discounts or services for free through AIN, Yodice said.
“It’s never been about money, with us, it’s about people,” she said.
AIN is currently gearing up for its first walk-a-thon at the Brick Reservoir on Sept. 16.
Registration will be held from 9 to 10 a.m. The walk begins at 10 a.m. and ends at noon. Participants can walk one 1.6-mile lap or two laps around the reservoir and can walk for themselves or in honor of someone else.
“We are feeding all the walkers [for free],” Yodice said. Pizza, sandwiches and ice cream will be available at the walk. Participants also receive free water and a T-shirt.
All the funds raised go back to the nonprofit – not into anyone’s pocket.
AIN is an organization where even the executive directorship is a volunteer position, Yodice said.
“There are so many nonprofits that don’t help,” she said. “They raise tons of money and don’t do anything to help anybody.”
All the work is done from Yodice’s home office with the help of two of the organization’s five board members, Marlene Stoever and Kimberly A. Conway. They both have autoimmune diseases and Yodice has helped them too. Now they help her.
“A lot of people with autoimmune disorders have multiple conditions,” she said.
Instead of spending $40 on a membership to nonprofit groups that only focus on one disorder, Yodice offers her advice and referral service for free.
Autoimmune disorders are sometimes chronic and never leave the person’s system. So diet and the amount of stress, a common trigger for a flare-up, should be monitored, Yodice said.
With this in mind, Yodice has also organized a prewalk-a-thon fundraiser at Camille’s Sidewalk Cafe. Between 2-5 p.m. on Sept. 2, AIN will host a smoothie tasting at the cafe. Tickets are $10, and can be purchased at the door.
For more information on autoimmune diseases and support groups in the area or AIN’s upcoming walk-a-thon, visit www.aininc.org or call (732) 262-0450.