BY JENNIFER DOME
Staff Writer
Barbara A. Yodice BRICK — Imagine that you are drying dishes after dinner. Now imagine dropping a dish, for no reason other than your hands are too weak to hold it.
Welcome to the life of Barbara A. Yodice. Dropping dishes and not being able to fix her hair or apply makeup are common struggles for Barbara — and common for people with myasthenia gravis.
Myasthenia gravis, or MG, as Barbara refers to the disease, is just one of 80 known autoimmune diseases. Autoimmune diseases are the result of the body’s own immune system mistakenly attacking its own tissues, organs and cells.
There are 50 million people with autoimmune diseases, according to information provided by Barbara and her new nonprofit organization, Autoimmune Information Network (AIN). Of those 50 million people, 30 million are women.
Barbara, 33, runs AIN with her husband, Keith W. Yodice, and her sister, Terry M. DeVogel. AIN was officially started this February, but Barbara said it grew out of the MG support group that she started two years ago.
“You can get all the facts and figures you want, but the person doesn’t want to be a fact or figure,” Barbara said. “It’s not that we just provide information … it’s people calling because they’re just having a hard time.”
Barbara began having problems in 1998 when she was just 26 years old. At that time, she was diagnosed with bone marrow cancer. Soon after, she realized that her eyes were drooping a lot, and she was falling down for no reason.
“I fell down the basement stairs seven times,” she recalls.
At first, doctors told her she had chronic fatigue syndrome. Then, in 2000, Barbara saw a public service announcement about multiple sclerosis (MS) that referred to symptoms she was experiencing, such as not being able to swallow hot foods. And, she said, she had double vision.
“I had to close one eye to read,” she said.
Barbara visited a neurologist, who eventually determined that she had MG.
“It was one of those bizarre things I’d never heard of,” she said. “It’s horribly under-diagnosed and misdiagnosed.”
Barbara had her thymus gland removed in 2000. The gland is supposed to be the size of a walnut, but hers was as big as a grapefruit. There was only a 10 percent chance that removing the thymus gland would help her, she said.
“It hasn’t helped me,” she said.
Now, she has intravenous immunoglobulin treatment every five weeks. When she’s due for her treatment, Barbara said, her hands get weak, and that’s when she breaks dishes and has a hard time fixing her own hair.
“You learn to adapt to it,” she said.
Because MG affects the body’s voluntary muscles, and breathing is one of them, many times MG patients aren’t given the attention they need unless they’re in breathing distress, Barbara said. But even eating can be a complication for MG sufferers.
“Your brain is fully functioning, but your body is taking a vacation that you didn’t sign up for,” she said.
Barbara has been married to Keith since 1998, and although he offers to help her all the time, she insists on doing most things on her own.
“My stubbornness comes into play a lot,” she said with a laugh.
Keith said that his involvement with AIN began as a way to support his wife, but it has turned into more than that.
“I’ve seen what has happened after you’ve been able to help somebody,” he said.
At times, Keith said, it can be hard to see his wife suffering. He said he was raised to believe that the husband helps his wife, but sometimes there’s nothing he can do.
“There are a lot of times where I feel helpless,” he said.
Barbara stopped working in September — a decision that she said was very hard. She worked as a florist, and although the job involved a lot of lifting, she enjoyed the sense of normalcy it gave her.
“That’s a kick on your psyche,” she said about leaving her job.
Barbara has lived in Brick her whole life, so luckily her family is nearby to help. And, she said, she leans a lot on the people she’s met in the support group.
She said it’s important to talk with other people who are going through the same struggles. Most people with autoimmune diseases such as MG, MS, lupus, scleroderma, rheumatoid arthritis and type 1 diabetes, look fine but can feel healthy one minute and very poorly the next.
“Many people think they’re exaggerating, because they look fine,” Barbara said. She added that she’s heard many stories from women whose husbands don’t understand why they don’t have the energy to do things.
The purpose of AIN, according to the organization’s mission statement, is to help direct patients and families to medication assistance programs, support groups, help with paperwork and appropriate applications, and even find monetary resources if the need arises. Barbara said the group will help patients and families find doctors that specialize in the various diseases, and act as an advocate if need be.
“I’m all for research, but you can’t do research without getting to the core of the problem — the patient,” she said. “We want to get them help in any way they need.”
Keith said he hopes AIN will grow to become a national organization. He said that while he and his wife can talk to people in other states over the phone, personal interaction means everything.
Barbara said she has met many other autoimmune disease sufferers through the support group. She has brought in speakers on massage therapy, holistic healing, reflexology, meditation and other subjects.
The group meets on the third Sunday of each month at 1 p.m. at Ocean Medical Center. This particular support group is for people who suffer from MG, but Barbara said she is starting a new support group soon that will cover autoimmune diseases in general.
Barbara said that through the support group, she found that many people with one autoimmune disease eventually suffer from more. In addition to MG, she has developed both sarcoidosis, which affects the lungs, and lupus, which affects the skin and eventually can go into the bones, kidney, liver, lungs and brain.
There are drug treatments for all kinds of autoimmune diseases, but they also have their own side effects, such as diabetes and osteoporosis.
“The fatigue is horrible,” she said.
Barbara said that by all accounts, she should’ve died five years ago. But she has beaten the odds, and she now can share the things she’s learned and give others the personal attention they need.
“I just feel that I’m supposed to do something with the knowledge I’ve gained,” she said. “I found my path.
“Something good has to come out of everything.”
Resources
• For more information about the Autoimmune Information Network, contact Barbara A. Yodice at (732) 262-0450, or e-mail [email protected].
• For information about the myasthenia gravis support group at Ocean Medical Center, contact (732) 840-2200.
• For other information about autoimmune diseases, log on to the American Autoimmune Related Diseases Association Web site at www.aarda.org.